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End of life care for people with life-limiting conditions

About

What is covered

This interactive flowchart covers the clinical care of adults (18 years and over) 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.
The guidance in this flowchart 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

13 March 17 End of life care for adults (NICE quality standard 13) updated and statement 11 on care in the last days of life removed and replaced by care of dying adults in the last days of life (NICE quality standard 144).

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 the clinical care of adults (18 years and over) 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.
The guidance in this flowchart 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

13 March 17 End of life care for adults (NICE quality standard 13) updated and statement 11 on care in the last days of life removed and replaced by care of dying adults in the last days of life (NICE quality standard 144).

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 2017) 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.

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 in end of life care and should be read in full.

Quality statement

People approaching the end of life are identified in a timely way.

Quality measure

See also quality measures and national indicators for further information.
Structure:
a) Evidence of local systems in place to document identification of people approaching the end of life.
b) Evidence of local retrospective audits of how soon (such as by days, weeks, months or years) people were identified as approaching the end of life before death.
A proportion of deaths will be unexpected and therefore unlikely to be identified in time to be included on a register or equivalent system. Some people may not wish to be identified and/or may not consent to being included on a register or equivalent system.
Outcome:
a) People approaching the end of life, and their families and carers, are aware of the aims of care.
b) People approaching the end of life, and their families and carers, feel that early identification of their need for end of life care helped with meeting their specific needs and preferences in a timely and meaningful way.
See the overview for overarching outcomes.

What the quality statement means for each audience

Service providers ensure that systems are in place to identify people approaching the end of life in a timely way.
Health and social care professionals act to identify people approaching the end of life in a timely way.
Commissioners ensure they commission services that identify people approaching the end of life in a timely way and have the capability to record identification.
People approaching the end of their life are identified at the right time to receive care and support to meet their needs and preferences.

Source guidance

Department of Health quality markers and measures for end of life care top ten quality marker for providers 2; and markers and measures 1.8, 1.13, 1.17, 3.3, 3.7 and 8.2.

Data source

Structure:
a) Quality and Outcomes Framework (QOF) indicator PC 3 (primary care only) – the practice has a complete register available of all patients in need of palliative care/support irrespective of age. The draft End of life care locality register pilot programme core dataset from the Information Standards Board records patients in any setting who have been entered onto an end of life care locality register. The draft comprehensive dataset also records the date added to GP Gold Standards Framework register.
b) Local data collection. The National End of Life Care Intelligence Network published a report on Predicting death: estimating the proportion of deaths that are 'unexpected' based on Office for National Statistics (ONS) mortality data, which may be useful in estimating the proportion of people who might be identified as approaching the end of life.
Outcome: a) Local data collection. Office for National Statistics (ONS) National bereavement survey (VOICES) includes a question on whether the person who died knew that they were likely to die.
b) Local data collection.

Definitions

Identification of people approaching the end of life may be initiated by either health or social care professionals in any setting. Although professionals should discuss with the person and their families and carers the benefits of being identified and the use of a register or equivalent system, the process of identification should be sensitive to the possibility that not all people will want to be identified and/or placed on a register.
In Treatment and care towards the end of life: good practice in decision making, the General Medical Council defines approaching the end of life as when a person is likely to die within the next 12 months. This timeframe provides a guide as to when people might be identified as approaching the end of life. For some conditions, the trajectory may require identification and subsequent planning to happen earlier. For other conditions, it may not be possible to identify people until nearer the time of death. Identification should take place with sufficient time to enable provision of high-quality end of life planning, care and support in accordance with the person's needs and preferences. Identification will need to be considered on an individual basis.
Examples of available tools for assisting clinicians with timely identification of people approaching the end of life, include:
See also supporting information on QOF Palliative Care (PC) indicator 3, which includes examples of identification criteria.
Information on a pilot programme for the use of locality registers for end of life care is available from the End of life locality registers evaluation, supported by the Department of Health and National End of Life Care Programme. End of life care locality registers are also known as electronic palliative care coordination systems.

Communication and information

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

Quality statement

People approaching the end of life and their families and carers are communicated with, and offered information, in an accessible and sensitive way in response to their needs and preferences.

Quality measure

See also quality measures and national indicators for further information.
Structure:
a) Evidence of local availability of end of life care information in a variety of formats and languages.
b) Evidence of local arrangements for the use of suitable environments to ensure sensitive communication about end of life care.
c) Evidence of local arrangements to ensure that people approaching the end of life and their families and carers know who to contact for advice.
d) Evidence that local service user feedback relating to end of life care, in the form of surveys, compliments and complaints, is collected, analysed and acted upon.
Process: Proportion of people identified as approaching the end of life who are offered information appropriate to their circumstances.
Numerator – the number of people in the denominator offered information appropriate to their circumstances.
Denominator – the number of people identified as approaching the end of life.
Outcome:
a) People approaching the end of life and their families and carers feel satisfied with how they are communicated with.
b) People approaching the end of life and their families and carers feel sufficiently informed about what they wish to know and supported to make decisions about their care.
See the overview for overarching outcomes.

What the quality statement means for each audience

Service providers ensure that systems are in place to communicate with, and offer information to, people approaching the end of life and their families and carers, in an accessible and sensitive way, in response to their needs and preferences.
Health and social care workers communicate with, and offer information to, people approaching the end of life and their families and carers, in an accessible and sensitive way, in response to their needs and preferences.
Commissioners ensure they commission services with systems in place to communicate with, and offer information to, people approaching the end of life and their families and carers, in an accessible and sensitive way, in response to their needs and preferences.
People approaching the end of life and their families and carers are communicated with and offered information in a sensitive way, at a time when it is helpful and with respect for their needs and preferences.

Source guidance

Department of Health quality markers and measures for end of life care 1.20, 1.35, 1.37, 2.7, 2.8, 3.15, 3.16, 4.9, 4.10, 5.9, 5.10, 6.9, 6.10, 8.8, 9.5 and 10.3.
NICE cancer service guidance key recommendation 8, and recommendations 1.25, 2.14, 3.17 and 4.7.

Data source

Structure:
a) Local data collection. The National care of the dying audit – hospitals may be relevant.
b) Local data collection. The NHS inpatient services survey asks inpatients (not specific to end of life care) whether they were given enough privacy when discussing their condition or treatment.
c) Local data collection. The NHS inpatient services survey asks inpatients (not specific to end of life care) whether hospital staff told them who to contact if they were worried about their condition or treatment after they left hospital.
d) Local data collection.
Process: Local data collection. The National care of the dying audit – hospitals may be relevant. 2011/12 Adult Social Care Outcome Framework: 3D: the proportion of people who use services and carers who find it easy to find information about services. The NHS inpatient services survey asks inpatients (not specific to end of life care) how much information about their condition or treatment was given to them.
Outcome:
a) Local data collection. Office for National Statistics (ONS) National bereavement survey (VOICES) includes a question on whether the person who has died was told they were likely to die in a sensitive and caring way. The NHS inpatient services survey asks inpatients (not specific to end of life care) whether they were given enough privacy when discussing their condition or treatment.
b) Local data collection. The NHS inpatient services survey asks inpatients (not specific to end of life care) whether they got answers they could understand when they had important questions to ask a doctor or nurse; whether their family or someone else close to them had enough opportunity to talk to a doctor if they wanted to and whether doctors or nurses gave their family or someone close to them all the information they needed to help care for them.

Definitions

Communication and information should be appropriate to the stage reached by the person who is approaching the end of life, and at a time (not too early or too late) when information is requested or useful in order to make choices or decisions. Communication with, and information for, families and carers should be considered around the same time as with the person approaching the end of life.
'Responsive' communication and information provision recognises that communication is a two-way process and that people's circumstances are likely to change over time. It is also tailored to individual circumstances, such as recognising the different needs of children and young people compared with adults.
Information offered to people approaching the end of life, and their families and carers, should include:
  • information about treatment and care options, medication and what to expect at each stage of the journey towards the end of life
  • who they can contact at any time of day or night to obtain advice, support or services
  • practical advice and details of other relevant services such as benefits support
  • details of relevant local and national self-help and support groups.
All information should be available in a variety of accessible formats and free at the point of delivery. Examples of leaflets on end of life care include those available to download from Dying Matters Coalition. Examples of information resources available specifically for children and young people include those from The Marie Curie Palliative Care Institute Liverpool and the Childhood Bereavement Network.
All communication and information provision should be sensitive to the needs and preferences of the person approaching the end of life and their families and carers, including those who do not wish to have such conversations at the present time. Those who do not wish to have information should have their preferences respected.

Assessment, care planning and review

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

Quality statement

People approaching the end of life are offered comprehensive holistic assessments in response to their changing needs and preferences, with the opportunity to discuss, develop and review a personalised care plan for current and future support and treatment.

Quality measure

See also quality measures and national indicators for further information.
Process: Proportion of people identified as approaching the end of life whose records include a documented assessment and discussion of their physical, psychological, social, spiritual and cultural needs and preferences.
Numerator – the number of people in the denominator whose records include a documented assessment and discussion of their physical, psychological, social, spiritual and cultural needs and preferences.
Denominator – the number of people identified as approaching the end of life.
Outcome:
a) People approaching the end of life and their families and carers feel that the assessment process was a useful means to considering their needs and preferences, identifying next steps and securing appropriate services.
b) People approaching the end of life feel satisfied that they have been able to discuss, record and review their needs and preferences if they would like to do so.
See the overview for overarching outcomes.

What the quality statement means for each audience

Service providers ensure that systems are in place to ensure comprehensive holistic assessments are carried out with people identified as approaching the end of life, in response to their changing needs and preferences, with the opportunity to discuss, develop and review a personalised care plan for current and future support and treatment.
Health and social care professionals offer or contribute to comprehensive holistic assessments with people identified as approaching the end of life, in response to their changing needs and preferences, including giving them the opportunity to discuss, develop and review a personalised care plan for current and future support and treatment.
Commissioners ensure they commission services that carry out comprehensive holistic assessments with people identified as approaching the end of life, in response to their changing needs and preferences, which include the opportunity to discuss, develop and review a personalised care plan for current and future support and treatment.
People approaching the end of life are offered full assessments to ensure they are getting the best care and support for their circumstances. During these assessments, they have the opportunity to discuss their needs (for example, physical, psychological, social, spiritual and cultural needs) and preferences. This includes the opportunity to develop and review a care plan detailing their preferences for current and future support and treatment.

Source guidance

Department of Health quality markers and measures for end of life care top ten quality markers for providers 3 and 4; and markers and measures 1.10, 1.11, 1.12, 1.35, 1.37, 2.2, 2.7, 2.8, 3.4, 3.5, 3.15, 3.16, 4.3, 4.4, 4.5, 4.9, 4.10, 5.2, 5.3, 5.9, 5.10, 6.2, 6.3, 6.9, 6.10, 7.6, 8.4, 8.8, 9.5 and 10.3.
NICE cancer service guidance key recommendation 2 and recommendation 1.18.

Data source

Process: Local data collection. Office for National Statistics (ONS) National bereavement survey (VOICES) includes questions on whether the person who has died was involved in decisions about their care and whether healthcare staff had a record of where the person would have liked to have died. The National care of the dying audit – hospitals may be relevant. The draft End of life care locality register pilot programme core dataset from the Information Standards Board includes preferences such as who else the person would like involved in decisions, preferences for place of death, 'do not attempt cardiopulmonary resuscitation' (DNACPR) request, Legal Advance Decision treatment refusal documents and details of any identified Lasting Power of Attorney. The comprehensive dataset also records religion or spiritual beliefs, whether the person has any special requests or preferences, whether there is anything in particular that they wish (ideally) to avoid, whether resuscitation has been discussed with them or their family and whether they have expressed a wish for organ or tissue donation.
Outcome: a) and b) Local data collection.

Definitions

A 'holistic' assessment includes, as a minimum, physical, psychological, social, spiritual, cultural, and where appropriate, environmental considerations. This may relate to needs and preferences as well as associated treatment, care and support.
Personalised care plans may also be known as personalised 'support' plans.
A comprehensive assessment is likely to be multidisciplinary and may require the input of both health and social care professionals, as well as other appropriate support services. A comprehensive assessment is one that is coordinated effectively in order to avoid duplication.
All assessments and related care planning should be carried out in a sensitive way and in the best interests of the person approaching the end of life, with appropriate consent. Discussion about the value of the assessment process and what the person and their families and carers can expect should be offered.
The following description of assessment is adapted from the NICE cancer service guidance:
Assessments should encompass all aspects of end of life care, taking into account the preferences of the person approaching the end of life, and their families and carers, with respect to:
  • written and other forms of information
  • face-to-face communication
  • involvement in decision-making
  • control of physical symptoms
  • psychological support
  • social support
  • spiritual support
  • organ and tissue donation.
Once people have been identified as approaching the end of life, they should receive a prompt initial holistic assessment. Assessment should be an ongoing and proactive process that is both planned and responsive. Timing of assessments should take into account changes in the person's condition or circumstances as well as specific requests from the person approaching the end of life and their families and carers.
Holistic common assessment guidance from the National End of Life Care Programme provides information on assessment during the last year of life.
Information about personalised care plans, which may or may not include advance statements or advance decisions to refuse treatment depending on the person's preferences, is available from the National End of Life Care Programme in Capacity, care planning and advance care planning in life limiting illness: A guide for health and social care staff.
A guide to person-centred care planning in adult social care is available from the Department of Health.

Holistic support – physical and psychological

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

Quality statement

People approaching the end of life have their physical and specific psychological needs safely, effectively and appropriately met at any time of day or night, including access to medicines and equipment.

Quality measure

See also quality measures and national indicators for further information.
Structure:
a) Evidence of local arrangements to provide people approaching the end of life with access to psychological support.
b) Evidence of local use of supportive environments for managing psychological symptoms in people approaching the end of life that provide privacy and dignity.
Process:
a) Proportion of people identified as approaching the end of life who have a treatment plan for symptom management incorporating current and anticipated physical and specific psychological needs.
Numerator – the number of people in the denominator with a treatment plan for current and future symptom management incorporating physical and specific psychological needs.
Denominator – the number of people identified as approaching the end of life.
b) Proportion of people identified as approaching the end of life with unrelieved physical symptoms who are referred for specialist palliative care advice.
Numerator – the number of people in the denominator referred for specialist palliative care advice.
Denominator – the number of people identified as approaching the end of life with unrelieved physical symptoms.
c) Proportion of people identified as approaching the end of life with unrelieved specific psychological symptoms who are referred for specialist psychological advice.
Numerator – the number of people in the denominator referred for specialist psychological advice.
Denominator – the number of people identified as approaching the end of life with unrelieved specific psychological symptoms.
Outcome:
a) People approaching the end of life feel satisfied with their level of physical comfort.
b) People approaching the end of life feel psychologically supported.
c) Carers and families of people approaching the end of life feel satisfied with the management of the person's physical comfort and psychological support, where appropriate.
See the overview for overarching outcomes.

What the quality statement means for each audience

Service providers ensure that services are available and systems are in place to meet the physical and specific psychological needs of people approaching the end of life, including access to medicines and equipment, in a safe, effective and appropriate way at any time of day or night.
Health and social care professionals manage physical and specific psychological symptoms in people approaching the end of life, including provision of medicines and equipment, in a safe, effective and appropriate way at any time of day or night. This may include contacting specialists for advice.
Commissioners ensure they commission generalist and specialist services that are able to meet the physical and specific psychological needs of people approaching the end of life, including access to medicines and equipment, in a safe, effective and appropriate way at any time of day or night.
People approaching the end of life receive treatment and care to manage their physical and psychological needs, which may be at any time of day and night.

Source guidance

NICE cancer service guidance key recommendations 9 and 12 and recommendations 5.12 and 8.37.

Data source

Structure:
a) Local data collection. National cancer peer review programme – Manual for cancer services: psychological support measures: various measures relating to psychological support for people with cancer (no national data collection).
b) Local data collection. The NHS inpatient services survey asks inpatients (not specific to end of life care) whether they were given enough privacy when discussing their condition or treatment.
Process:
a) Local data collection.
b) Local data collection. The draft End of life care locality register pilot programme comprehensive dataset from the Information Standards Board records whether the person is known to a specialist palliative care team.
c) Local data collection.
Outcome:
a) Local data collection. Office for National Statistics (ONS) National bereavement survey (VOICES) includes questions on how well the person's pain was relieved. The National care of the dying audit – hospitals may be relevant. The NHS inpatient services survey asks inpatients (not specific to end of life care) whether they were ever in any pain and whether they thought that hospital staff did everything they could to help control their pain.
b) Local data collection.
c) Local data collection. Office for National Statistics (ONS) National bereavement survey (VOICES) includes a question on the level of support provided for relief of pain and other symptoms.

Definitions

It is recognised that physical and psychological symptoms cannot always be fully controlled. Effective symptom management results in the optimum comfort level that can be achieved for the person approaching the end of life, within clinical possibility and limitations, and patient choice. All treatment and support should be tailored to the individual.
The treatment plan for managing symptoms and side effects should be recorded in a personalised care plan described in quality statement 3.
Safe, effective and appropriate symptom and side-effect management at any time of day or night may require coordinated input from a number of different professionals and services. As a minimum, essential 24/7 care services should include:
  • generalist medical services (including GPs)
  • nursing services (defined as visiting, rapid response services and provision of one-to-one care at home, including overnight)
  • personal care services
  • access to pharmacy services
  • access to equipment and adaptations
  • specialist palliative care advice for generalists on symptom and side-effect management.
Psychological support encompasses general emotional support and empowerment as well as specialist psychological care. Emotional support is covered in quality statements 5 and 14. Specific psychological needs are more likely to require psychological interventions beyond the general emotional support that most people will need. Psychological interventions may include, but are not limited to, cognitive behaviour therapy, social skills training, work with phobias and confidence issues, and medication to ease psychological distress, including anxiety and depression.
Timescales for addressing symptoms and side effects will depend on the individual symptom, comfort and preferences of the person approaching the end of life and should be determined by clinical judgment. Response times should be independent of care setting.
Appropriate steps should be taken to alleviate symptoms in all circumstances, including where the person approaching the end of life is unable to communicate.

Holistic support – social, practical and emotional

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

Quality statement

People approaching the end of life are offered timely personalised support for their social, practical and emotional needs, which is appropriate to their preferences, and maximises independence and social participation for as long as possible.

Quality measure

Structure: Evidence of local arrangements to ensure that people approaching the end of life are offered timely personalised support for their social, practical and emotional needs, which is appropriate to their preferences, and maximises independence and social participation for as long as possible.
Process:
a) Proportion of people identified as approaching the end of life who receive information on social, practical and emotional support available.
Numerator – the number of people in the denominator receiving information on social, practical and emotional support available.
Denominator – the number of people identified as approaching the end of life.
b) Proportion of people identified as approaching the end of life who receive social and practical support in accordance with their care plan.
Numerator – the number of people in the denominator receiving social and practical support in accordance with their care plan.
Denominator – the number of people identified as approaching the end of life.
Outcome:
a) People approaching the end of life feel supported to live independently, in accordance with their preferences, for as long as possible.
b) People approaching the end of life feel able to maintain social participation, in accordance with their preferences, for as long as possible.
c) People approaching the end of life feel emotionally supported.
See the overview for overarching outcomes.

What the quality statement means for each audience

Service providers ensure that systems are in place to provide timely personalised support to people approaching the end of life for their social, practical and emotional needs. Support should be appropriate to their preferences, and maximise independence and social participation for as long as possible.
Health and social care workers follow local policies and procedures and signpost to relevant national or local services, to ensure that people approaching the end of life are offered timely personalised support for their social, practical and emotional needs. Support should be appropriate to their preferences, and maximise independence and social participation for as long as possible.
Commissioners ensure they commission services that provide timely personalised support to people approaching the end of life for their social, practical and emotional needs. Support should be appropriate to their preferences, and maximise independence and social participation for as long as possible.
People approaching the end of life are offered social, practical and emotional support tailored to their needs and at the right time to help them feel supported, retain their independence and do things they enjoy for as long as possible.

Source guidance

NICE cancer service guidance key recommendation 10 and recommendations 6.14, 6.16 and 6.24.

Data source

Structure: Local data collection. National cancer peer review programme: Manual for cancer services: rehabilitation measures – various measures relating to rehabilitation for people with cancer (no national data collection).
Process:
a) Local data collection. 2011/12 Adult Social Care Outcome Framework: 3D: the proportion of people who use services and carers who find it easy to find information about services.
b) Local data collection.
Outcome:
a) and b) Local data collection. Transparency in outcomes: a framework for quality in adult social care – The 2011/12 adult social care outcomes framework indicator 1B: the proportion of people who use services who have control over their daily life.
c) Local data collection. Office for National Statistics (ONS) National bereavement survey (VOICES) includes a question on the level of emotional support provided in the last 2 days of life.

Definitions

The definition of 'timely' will depend on the type of need and individual circumstances.
The Department of Health defines social care as a wide spectrum of activities that support and help people live their daily lives. It can include: intimate personal care, managing finances, adapting housing conditions, help attending leisure pursuits and support for carers.
Social support should include, but is not limited to (adapted from NICE cancer service guidance):
  • Assistance to obtain financial support, including information about 'special rules' or equivalent, and access to individuals such as welfare rights and benefits advisers who can provide information and assistance in completing applications.
  • Support with legal and practical affairs such as wills and funeral arrangements.
  • Practical support and advice, including personal and domestic care.
  • Support, advice and therapy to maintain independent living, including home adaptations and the provision of equipment.
  • Services to assess the needs and protect the rights of vulnerable adults or children of a family member approaching the end of life, and to support people approaching the end of life in caring for vulnerable adults or children.
  • Respite and day care/therapy in social and health care settings.
  • Care home placements.
Support for social needs may or may not require social care services. For example, many people rely on families and friends and their community to meet their social needs. Some voluntary organisations provide support services for people approaching the end of life.
Further information on community-based support is available in the 'think local act personal' publications.
The Social Care Institute for Excellence End of Life Care hub provides a place where new and existing information, resources and links are gathered together to support social care practitioners working with people and their families at the end of life.
Practical support should be provided by a multidisciplinary team, which may include occupational therapists, physiotherapists and other health professionals employed by health services, in addition to social care services. Effective practical support will require timely and rapid access to appropriate equipment such as commodes, pressure-relieving mattresses and other aids, to meet individual needs and preferences.
A stepped approach to emotional support may be appropriate, which could include but is not limited to:
  • information about local support services
  • general emotional support, such as supportive conversations with generalist health and social care workers or support from the voluntary, community and faith sectors
  • referral to more specialist support from trained counsellors, mental health workers or specialists in palliative care.
It is recognised that conflict can arise between what professionals may deem appropriate and what the person approaching the end of life wants or prefers, which may also differ with the views of families and carers. Appropriate support is support that has due regard to the preferences of the person approaching the end of life and is in their best interests.

Holistic support – spiritual and religious

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

Quality statement

People approaching the end of life are offered spiritual and religious support appropriate to their needs and preferences.

Quality measure

Structure
a) Evidence of local access to a range of spiritual care providers for people approaching the end of life, either in-house or through referral to appropriate providers in the community.
b) Evidence of availability of local chaplaincy services in accordance with NHS chaplaincy: meeting the religious and spiritual needs of patients and staff (Department of Health 2003).
Process: Proportion of people identified as approaching the end of life who receive spiritual and religious support in accordance with their care plan.
Numerator – the number of people in the denominator receiving spiritual and religious support in accordance with their care plan.
Denominator – the number of people identified as approaching the end of life.
Outcome: People approaching the end of life feel satisfied with the spiritual and/or religious support they have been offered and/or received.
See the overview for overarching outcomes.

What the quality statement means for each audience

Service providers ensure that systems are in place to offer, facilitate and provide (including sign-posting and referral) spiritual and religious support to people approaching the end of life that is appropriate to the person's needs and preferences.
Health and social care workers offer, facilitate and provide (including sign-posting and referral) spiritual and religious support to people approaching the end of life that is appropriate to the person's needs and preferences.
Commissioners ensure they commission services with adequate provision for offering, facilitating and providing (including sign-posting and referral) spiritual and religious support to people approaching the end of life that is appropriate to person's needs and preferences.
People approaching the end of life are offered spiritual and/or religious support appropriate to their needs and preferences.

Source guidance

NHS National End of Life Care Programme draft Spiritual support and bereavement care quality markers and measures for end of life care: spiritual support 1, 2, 3, 4 and 6.

Data source

Structure:
a) Local data collection.
b) Local data collection.
c) Local data collection.
Process: Local data collection.
Outcome: Local data collection. Office for National Statistics (ONS) National bereavement survey (VOICES) includes a question on the level of spiritual support provided in the last 2 days of life.

Definitions

In the context of the draft Spiritual support and bereavement care quality markers, spirituality is defined as 'those beliefs, values and practices that relate to the human search for meaning in life. For some people, spirituality is expressed through adherence to an organised religion, while for others it may relate to their personal identities, relationships with others, secular ethical values or humanist philosophies'.
In Standards for NHS Scotland Chaplaincy Services 2007 spiritual and religious care are defined as follows: 'religious care is given in the context of shared religious beliefs, values, liturgies and lifestyle of a faith community. Spiritual care is usually given in a one to one relationship, is completely person centred and makes no assumptions about personal conviction of life orientation. Spiritual care is not necessarily religious. Religious care, at its best is always spiritual'.
Spiritual support helps people approaching the end of life and those close to them including their relatives, carers and friends, to:
  • explore how they might understand, make sense of or find meaning in what is happening to them
  • identify sources of strength they can draw on, and
  • decide whether those sources are helpful during this period in their lives.
Such support does not have to be structured, but the expectation is that it would also include assessment and provision of resources to support the person approaching the end of life and those close to them. Spiritual support is tailored to the needs, beliefs and values of the person approaching the end of life.
Within healthcare, chaplains are the main spiritual care providers. In some circumstances, health and social care professionals and workers may assist with spiritual care. Spiritual interventions that make up spiritual support can come in many forms, such as:
  • referral to a chaplain or dedicated spiritual care provider, counsellor, psychologist or therapist, or where appropriate a spiritual leader in the community
  • arranging transport so that a person can attend religious services in places of faith and worship
  • counselling someone who feels that life has lost all meaning, listening to them express doubts about their religious faith, or helping them make peace with their family or their own past.
Families and relationships tend to be an important influence on spiritual wellbeing, and much support can be provided from within the family or by close friends.
Personal beliefs and medical practice (General Medical Council 2013) provides detailed guidance for doctors on personal beliefs.
Further detail on auditing spiritual support is available from draft Spiritual support and bereavement care quality markers and measures for end of life care (NHS National End of Life Care Programme 2011).

Holistic support – families and carers

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

Quality statement

Families and carers of people approaching the end of life are offered comprehensive holistic assessments in response to their changing needs and preferences, and holistic support appropriate to their current needs and preferences.

Quality measure

See also quality measures and national indicators for further information.
Structure:
a) Evidence of local arrangements to ensure that families and carers of people approaching the end of life receive comprehensive holistic assessments in response to their changing needs and preferences.
b) Evidence of local arrangements to ensure that families and carers of people approaching the end of life are offered holistic support appropriate to their own current needs and preferences.
Process:
a) Proportion of nominated informal carers (such as a family member) of people identified as approaching the end of life, who receive a comprehensive and holistic assessment of their own needs and preferences.
Numerator – the number of people in the denominator receiving a comprehensive and holistic assessment of their own needs and preferences.
Denominator – the number of nominated informal carers (such as a family member) of people identified as approaching the end of life.
b) Proportion of nominated informal carers (such as a family member) of people identified as approaching the end of life, who receive holistic support in accordance with their most recent assessment.
Numerator – the number of people in the denominator receiving holistic support in accordance with their most recent assessment.
Denominator – the number of nominated informal carers (such as a family member) of people identified as approaching the end of life, who have received an assessment of their own needs.
Outcome:
a) Carers and families of people approaching the end of life feel supported.
b) Carer quality of life.
See the overview for overarching outcomes.

What the quality statement means for each audience

Service providers ensure that systems are in place to offer families and carers of people approaching the end of life comprehensive holistic assessments in response to their changing needs and preferences, and holistic support appropriate to their current needs and preferences.
Health and social care professionals offer families and carers of people approaching the end of life comprehensive holistic assessments in response to their changing needs and preferences, and holistic support appropriate to their current needs and preferences.
Commissioners ensure they commission services that offer comprehensive holistic assessments in response to their changing needs and preferences, and holistic support appropriate to their current needs and preferences.
Families and carers of people approaching the end of life have their own needs fully assessed as appropriate for their changing needs and preferences, and are offered support to help them cope.

Source guidance

Department of Health quality markers and measures for end of life care top ten quality marker for providers 5; and markers and measures 2.3, 3.10 and 3.11.

Data source

Structure:
a) Quality and Outcomes Framework (QOF) indicator MANAGEMENT 9 (primary care): The practice has a protocol for the identification of carers and a mechanism for the referral of carers for social services assessment. The Operating Framework for the NHS in England 2011–12 integrated performance measure SQU08: Agree and make available to local people policies, plans and budgets to support carers (not specific to end of life care).
b) Local data collection
Process:
a) Local data collection. The draft End of life care locality register pilot programme core dataset from the Information Standards Board records carer details. The draft comprehensive dataset records whether there is a care plan in place for the carer.
b) Local data collection.
Outcome:
a) Local data collection. 2011/12 Adult Social Care Outcome Framework indicators 3B – Overall satisfaction of carers with social services and 3C – The proportion of carers who say that they have been included or consulted in discussions about the person they care for (not end of life care specific). Office for National Statistics (ONS) National bereavement survey (VOICES) includes a question on whether the responder and their family got as much help and support from health and social services as they needed when caring for the person who died and whether they were able to discuss any worries and fears they may have had about the person's condition, treatment or tests with GPs.
b) Local data collection. The NHS Outcomes Framework 2011/12 indicator 2.4 – Health-related quality of life for carers (not end of life care specific). 2011/12 Adult Social Care Outcome Framework indicator 1D – Carer-reported quality of life (not end of life care specific).

Definitions

A 'holistic' assessment includes, as a minimum: physical, psychological, social, spiritual, cultural, and where appropriate, environmental considerations. This may relate to needs and preferences as well as associated treatment, care and support.
A comprehensive assessment is likely to be multidisciplinary and may require the input of both health and social care professionals, as well as other appropriate support services. A comprehensive assessment is one that is coordinated effectively in order to avoid duplication.
'Carers' here are defined as informal, unpaid carers or supporters, rather than paid health and social care workers. Sometimes the main carer will be a child, a young person or a person with his or her own disability, and services should be sensitive to the particular issues that this may raise.
The term 'families' is broad and relates to any person who has significant contact with the person approaching the end of life, including children, a partner or close friends. Occasionally, particularly in hostels, for example, staff working directly with the person approaching the end of life may fulfil this role.
A carer's assessment is defined by the Department of Health's End of life care strategy: quality markers and measures for end of life care. Carers can be identified for this assessment by social services, GPs and through self-referral by carers themselves.
Support for families and carers may include emotional and psychological support. Training on practical issues should be available for those caring for people approaching the end of life who require extra help with daily living or extensive care. Addressing the needs of carers should also include access to good quality respite care, appropriate to their circumstances. This may include residential and day respite, as well as overnight one-to-one care in the person's home, for example. Support may also encompass planning for other circumstances, for example when carers are taken ill.
The emphasis here is on support being offered to carers. The right of carers to refuse support must be respected. Carers who decline support initially should be offered the opportunity to change their minds later on, if they wish.
Examples of information resources available for families and carers include those from the Dying Matters Coalition.
Supporting carers: an action guide for general practitioners and their teams is available from the Royal College of General Practitioners.
Bereavement support is addressed specifically in quality statement 14.

Coordinated care

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

Quality statement

People approaching the end of life receive consistent care that is coordinated effectively across all relevant settings and services at any time of day or night, and delivered by practitioners who are aware of the person's current medical condition, care plan and preferences.

Quality measure

See also quality measures and national indicators for further information.
Outcome: See the overview for overarching outcomes.

What the quality statement means for each audience

Service providers ensure that systems (such as those for information sharing) are in place, to provide consistent care at all times of day and night to people approaching the end of life, that is coordinated effectively across all relevant settings and services and delivered by practitioners who are aware of the person's current medical condition, care plan and preferences.
Health and social care professionals provide consistent care for people approaching the end of life at all times of day or night that is coordinated effectively across all relevant settings and services. They follow local policies and procedures for information sharing so that care is delivered by practitioners who are aware of the person's current medical condition, care plan and preferences.
Commissioners ensure they commission services with appropriate systems in place (including those for information sharing) to ensure that people approaching the end of life receive consistent care at all times of day and night, that is coordinated effectively across all relevant settings and services and that is delivered by practitioners who are aware of their current medical condition, care plan and preferences.
People approaching the end of life receive care whenever they need it (day or night) that is consistent, smoothly coordinated and delivered by staff who are aware of their medical condition, care plan and preferences.

Source guidance

Department of Health quality markers and measures for end of life care top ten quality markers for providers 4 and 6; and markers and measures 1.14, 1.16, 1.17, 1.18, 1.19, 1.21, 1.24, 2.2, 3.5, 3.7, 3.8, 3.13, 4.2, 4.4, 4.12, 5.2, 5.4, 5.12, 6.2, 6.4, 7.6, 8.3, 8.4, 9.2, 9.3, 9.4, 9.6 and 10.5.
NHS National End of Life Care Programme draft Spiritual support and bereavement care quality markers and measures for end of life care: spiritual support 2.

Data source

The following data sources may be relevant to the referenced measures:
Quality and Outcomes Framework (QOF) indicator RECORDS 3: The practice has a system for transferring and acting on information about patients seen by other doctors out of hours.
QOF indicator RECORDS 13: There is a system to alert the out-of-hours service or duty doctor to patients dying at home.
QOF indicator PC 2: The practice has regular (at least 3 monthly) multidisciplinary case review meetings where all patients on the palliative care register are discussed.
The National care of the dying audit – hospitals may be relevant.
The NHS inpatient services survey asks inpatients (not specific to end of life care) questions about delayed discharge from hospital.
Office for National Statistics (ONS) National bereavement survey (VOICES) includes questions on whether services worked well together.
The draft End of life care locality register pilot programme core dataset from the Information Standards Board records details of a key worker.

Definitions

Consistent care means that the person approaching the end of life experiences seamless care that is of a uniformly high standard, regardless of which professionals are delivering the care at the time and in what setting. Also, the information that the person receives is clear and the content is neither confusing nor contradictory.
The 'source references' provide detailed examples of what information should be shared, and between which providers and services. Particular attention should be paid to communication between settings and between daytime and out-of-hours services. One mechanism for facilitating effective care coordination could be the implementation of a locality register or equivalent system. Information on the use of locality registers for end of life care is available from the End of life locality registers evaluation, supported by the Department of Health and National End of Life Care Programme. End of life care locality registers are also known as electronic palliative care coordination systems. Standardised documentation may also be helpful.
All information-sharing should be carried out with appropriate consents and in accordance with current confidentiality and data protection guidance.
Department of Health quality markers and measures for end of life care refer to a 'key worker' as an example of how coordinated care might be facilitated. A key worker is one or possibly a small number of named workers who, with the consent and agreement of the person approaching the end of life, take an important role in coordinating the individual's care. They promote continuity, ensuring the individual, and their families and carers, know who to access for information and advice. Further definition of the key worker role is available from NICE cancer service guidance recommendation 1.29.
Coordination of care is important for ensuring timely, safe and effective transfer of appropriate documentation, patient records, equipment and medication.

Urgent care

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

Quality statement

People approaching the end of life who experience a crisis at any time of day or night receive prompt, safe and effective urgent care appropriate to their needs and preferences.

Quality measure

See also quality measures and national indicators for further information.
Structure: Evidence of local arrangements to ensure that people approaching the end of life who experience a crisis at any time of day or night receive prompt, safe and effective urgent care. This should be appropriate to their needs and preferences and delivered within locally agreed timescales.
Process: Proportion of nominated informal carers (such as a family member) of people identified as approaching the end of life, who have information about how to access urgent care in the event of a crisis at any time of day or night.
Numerator – the number of people in the denominator receiving information about how to access urgent care in the event of a crisis at any time of day or night.
Denominator – the number of nominated informal carers (such as a family member) of people identified as approaching the end of life.
Outcome:
a) People approaching the end of life feel that any crisis or need for urgent care was addressed in a prompt, safe and effective way appropriate to their needs and preferences.
b) Carers of people approaching the end of life feel that any crisis or need for urgent care was addressed in a prompt, safe and effective way appropriate to the person's needs and preferences.
See the overview for overarching outcomes.

What the quality statement means for each audience

Service providers ensure that systems are in place to provide people approaching the end of life who experience a crisis at any time of day or night, with prompt, safe and effective urgent care, appropriate to the person's needs and preferences.
Health and social care professionals respond appropriately to crises experienced by people approaching the end of life, at any time of day or night, by providing prompt, safe and effective urgent care, appropriate to the person's needs and preferences.
Commissioners ensure they commission urgent care services that provide people approaching the end of life who experience a crisis at any time of day or night, with prompt, safe and effective urgent care, appropriate to the person's needs and preferences.
People approaching the end of life who experience a crisis at any time of day or night receive prompt, safe and effective urgent care that takes into account their needs and preferences.

Source guidance

Department of Health quality markers and measures for end of life care top ten quality marker for providers 4; and markers and measures 1.16, 1.17, 1.18, 1.19, 1.21, 2.2, 2.11, 3.7, 4.12, 6.7, 7.6, 8.4, 8.5, 8.8, 9.2, 9.3, 9.4, 10.3, 10.4, 10.5 and 10.6.

Data source

Structure: Local data collection.
Process: Local data collection.
Outcome:
a) Local data collection. The NHS Outcomes Framework 2011/12 indicator 4.3 – patient experience of A&E services (not specific to end of life care).
b) Local data collection. Office for National Statistics (ONS) National bereavement survey (VOICES) includes questions on urgent care.

Definitions

A 'crisis' is a significant unplanned event where there is an element of distress or disruption requiring urgent response and appropriate intervention.
The definition of 'prompt' will vary depending on the circumstances of the crisis. Timescales should be determined locally based on need.
In the Royal College of General Practitioners' Urgent and emergency care clinical audit toolkit, reference is made to a definition of urgent care as the range of responses that health and care services provide to people who require – or who perceive the need for – urgent advice, care, treatment or diagnosis. People using services and their families and carers, should expect 24 hours a day, 7 days a week consistent and rigorous assessment of the urgency of their care need and an appropriate and prompt response to that need.
Urgent care may also be described as unscheduled care and includes, but is not limited to, both daytime and out-of-hours GP visits in the community, as well as emergency 999 ambulance response and rapid access care. Urgent care may be provided by a range of professionals across all settings and is delivered in a number of different forms. Settings may include, but are not limited to, primary, secondary, and community-based services.
Coordinated care with effective information sharing is essential to delivering urgent care that takes into account both the needs and preferences of the person approaching the end of life (see quality statement 8 on coordinated care). There must also be adequate provision of appropriate specialist palliative care advice and staff who are responsive to emergency need, including the option for 24 hours a day, 7 days a week access to specialist palliative inpatient care (see quality statements 4, 10 and 16).

Specialist palliative care

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

Quality statement

People approaching the end of life who may benefit from specialist palliative care, are offered this care in a timely way appropriate to their needs and preferences, at any time of day or night.

Quality measure

See also quality measures and national indicators for further information.
Outcome: See the overview for overarching outcomes.

What the quality statement means for each audience

Service providers ensure that systems are in place (such as shift patterns and on-call rotas), to provide timely specialist palliative care and advice at any time of day and night for people approaching the end of life who may benefit from specialist input. Care should be appropriate to the person's needs and preferences.
Health and social care professionals provide timely specialist palliative care and advice at any time of day or night for people approaching the end of life who may benefit from it, or know who to contact for specialist palliative care and advice. Care should be appropriate to the person's needs and preferences.
Commissioners ensure they commission specialist palliative care services with sufficient provision and capacity to provide timely specialist palliative care and advice at any time of day and night for people approaching the end of life who may benefit from specialist input. Care should be appropriate to their needs and preferences.
People approaching the end of life are offered specialist palliative care if their usual care team are unable to relieve their symptoms adequately. It is offered at the right time for them and is appropriate to their needs and preferences at any time of day or night.

Source guidance

Department of Health quality markers and measures for end of life care top ten quality markers for providers 7; and markers and measures 1.22, 1.23, 1.27, 3.2, 6.7, 6.8, 7.2, 7.3, 7.4, 7.5, 7.6 and 10.4.

Data source

Process: Local data collection. The draft End of life care locality register pilot programme comprehensive dataset from the Information Standards Board records whether the person is known to a specialist palliative care team.
The National Council for Palliative Care collects activity data on specialist palliative care services via the minimum data set (MDS) for Specialist Palliative Care Services.

Definitions

Specialist palliative care encompasses hospice care (including inpatient hospice, day hospice, hospice at home) as well as a range of other specialist advice, support and care such as that provided by hospital palliative care teams. Specialist palliative care should be available on the basis of need, not diagnosis.
'People who may benefit from specialist palliative care' are those whose symptoms cannot be managed in a timely way by their usual care team.
The following minimum recommended service levels have been adapted from NICE cancer service guidance and the Department of Health quality markers.
Specialist palliative care inpatient facilities should be responsive to emergency need and able to admit people approaching the end of life at any time of day or night.
Palliative care services should ensure provision to:
  • Visit and assess people approaching the end of life face-to-face in any setting between 09.00 and 17.00, 7 days a week (provision for bed-side consultations outside these hours is high-quality care).
  • Provide specialist palliative care advice at any time of day or night, which may include telephone advice.
Specialist palliative care, including assessment and advice, may be provided by physicians in palliative medicine or other suitably trained practitioners, such as clinical nurse specialists in palliative care. Qualified district nurses – 'specialist community practitioners in home nursing' – may or may not have an appropriate level of education in specialist palliative care. Social workers, occupational therapists, physiotherapists and other therapists may also have specialist skills in palliative care.

Care in the last days of life

This statement has been removed and replaced by NICE’s quality standard on care of dying adults in the last days of life. For more details see update information.

Care after death – care of the body

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

Quality statement

The body of a person who has died is cared for in a culturally sensitive and dignified manner.

Quality measure

See also quality measures and national indicators for further information.
Outcome: Families and carers of a person who has died feel that the body was cared for after death in a culturally sensitive and dignified manner.
See the overview for overarching outcomes.

What the quality statement means for each audience

Service providers ensure that systems are in place for culturally sensitive and dignified care of the body after death.
Health and social care professionals care for the body of a person who has died in a culturally sensitive and dignified manner.
Commissioners ensure they commission services that provide culturally sensitive and dignified care of the body after death.
The body of a person who has died is cared for in a culturally sensitive and dignified manner.

Source guidance

Data source

Outcome: Local data collection.
The National care of the dying audit – hospitals may be relevant.

Care after death – verification and certification

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

Quality statement

Families and carers of people who have died receive timely verification and certification of the death.

Quality measure

See also quality measures and national indicators for further information.
Outcome: Families and carers of people who have died feel satisfied with how quickly verification and certification of the death took place.
See the overview for overarching outcomes.

What the quality statement means for each audience

Service providers ensure that systems are in place to ensure timely verification and certification of death.
Health and social care professionals follow local procedures to ensure timely verification and certification of the death.
Commissioners ensure they commission services that ensure timely verification and certification of death.
Carers and family members of people who have died receive verification and certification of the death as soon as possible.

Source guidance

NHS National End of Life Care Programme draft Spiritual support and bereavement care quality markers and measures for end of life care: bereavement care 2 and 4.

Data source

Outcome: Local data collection.
The National care of the dying audit – hospitals may be relevant.

Definitions

Timely verification and certification of death should include information for families and carers on:
  • when, where and how to register a death
  • information on the role of the coroner (if coroner involvement is likely).

Care after death – bereavement support

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

Quality statement

People closely affected by a death are communicated with in a sensitive way and are offered immediate and ongoing bereavement, emotional and spiritual support appropriate to their needs and preferences.

Quality measure

See also quality measures and national indicators for further information.
Structure:
a) Evidence of a local needs assessment for bereavement services, detailing specialist support needs for all sections of the community including vulnerable groups such as children and those with learning difficulties.
b) Evidence that a local service specification for bereavement services has been developed in partnership with acute, community, voluntary and private sector providers and local authorities, which includes the provision of specialist support for groups identified in the needs assessment.
Outcome: People closely affected by a death feel that information and support was available to them around the time of death and afterwards, which was appropriate for them and offered at the right time.
See the overview for overarching outcomes.

What the quality statement means for each audience

Service providers ensure that systems are in place for people closely affected by a death that include sensitive communication and provision for immediate and ongoing bereavement, emotional and spiritual support appropriate to their needs and preferences.
Health and social care workers communicate sensitively with people closely affected by a death and offer them immediate and ongoing bereavement, emotional and spiritual support appropriate to their needs and preferences.
Commissioners ensure they commission services for people closely affected by a death that include sensitive communication and provision for immediate and ongoing bereavement, emotional and spiritual support appropriate to their needs and preferences.
People closely affected by a death are communicated with in a sensitive way and offered bereavement, emotional and spiritual support appropriate to their needs and preferences. This may include information about practical arrangements and local support services, supportive conversations with staff, and in some cases referral for counselling or more specialist support.

Source guidance

Department of Health quality markers and measures for end of life care 1.15, 1.31, 3.10, 3.11, 3.12, 3.15, 3.16, 5.10, 6.10, 8.8 and 9.5.
NHS National End of Life Care Programme draft Spiritual support and bereavement care quality markers and measures for end of life care: bereavement care 1, 3, 4 and 5.

Data source

Structure:
a) Local data collection.
b) Local data collection.
Outcome: Local data collection. Office for National Statistics (ONS) National bereavement survey (VOICES) includes questions on whether enough help and support was provided by the healthcare team to the family or carer at the actual time of death, whether staff dealt with them in a sensitive manner, and whether they have since talked to anyone from health and social services or from a bereavement service, about their feelings about the person’s illness and death.

Definitions

People closely affected by a death may include care home residents, staff and volunteers, staff from a variety of health and social care organisations, as well as family members and carers, including children. Children may need particular tailored support.
Families and carers of people who have died suddenly or in an unexpected way, as well as those who were expecting the death, should have access to information and support appropriate to their circumstances.
Draft Spiritual support and bereavement care quality marker 2 on bereavement support recommends that bereaved people are offered support at the time of death that is culturally and spiritually appropriate, immediate, and available shortly afterwards.
Bereavement support may be not be limited to immediately after death, but may be required on a longer-term basis and, in some cases, may begin before death.
A stepped approach to emotional and bereavement support may be appropriate, which could include but is not limited to:
  • information about local support services
  • practical support such as advice on arranging a funeral, information on who to inform of a death, help with contacting other family members and information on what to do with equipment and medication
  • general emotional and bereavement support, such as supportive conversations with generalist health and social care workers or support from the voluntary, community and faith sectors
  • referral to more specialist support from trained bereavement counsellors or mental health workers.
See quality statement 6 for a definition of spiritual support.
A model of bereavement support is detailed in NICE cancer service guidance recommendation 12.30. Further guidance on bereavement support is available from When a patient dies: guidance for professionals on developing bereavement services (Department of Health 2005).
People closely affected by a death should be able to access all support within an appropriate physical environment that facilitates sensitive communication.

Workforce – training

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

Quality statement

Health and social care workers have the knowledge, skills and attitudes necessary to be competent to provide high-quality care and support for people approaching the end of life and their families and carers.

Quality measure

See also quality measures and national indicators for further information.
Structure:
a) Evidence of local arrangements to ensure that health and social care workers receive training appropriate to their role incorporating dealing with loss, grief and bereavement, and basic aspects of spiritual care, common to people of all faiths and none.
b) Evidence of local arrangements to ensure that training is informed by current legislation, national competences and good practice guidelines, where available.
c) Evidence of local arrangements to ensure that training is followed up with the use of competences as part of appraisals and professional development plans for health and social care workers to ensure that appropriate knowledge, skills and attitudes are embedded into practice and kept up to date.
Outcome:
a) Improved patient safety relating to end of life care treatment.
b) Health and social care workers who come into contact with people approaching the end of life and/or their families and carers feel confident and supported in caring for this group.
See the overview for overarching outcomes.

What the quality statement means for each audience

Service providers ensure that systems are in place to provide and assure education for all health and social care workers appropriate to their role. This should enable them to develop the knowledge, skills and attitudes necessary to be competent to provide high-quality care for people approaching the end of life and their families and carers.
Health and social care workers participate in appropriate training and engage in evaluation and supervision to ensure they have the knowledge, skills and attitudes necessary to be competent to provide high-quality care for people approaching the end of life and their families and carers.
Commissioners ensure they commission services that provide and assure education for all health and social care workers appropriate to their role. This should enable them to develop the knowledge, skills and attitudes necessary to be competent to provide high-quality care for people approaching the end of life and their families and carers.
People approaching the end of life and their families and carers are cared for and supported by staff with the knowledge, skills and attitudes needed to provide high-quality care.

Source guidance

Department of Health quality markers and measures for end of life care top ten quality marker for providers 8; and markers and measures 1.32, 1.33, 1.35, 1.37, 1.38, 1.39, 2.9, 3.3, 3.15, 3.16, 4.10, 5.9, 5.10, 6.9, 6.10, 7.8, 8.8, 9.5 and 10.3.
NHS National End of Life Care Programme draft Spiritual support and bereavement care quality markers and measures for end of life care: bereavement care 4 and spiritual support 4.
NICE cancer service guidance key recommendation 20 and recommendations 8.11 and 8.13.

Data source

Structure:
a) Local data collection. The National care of the dying audit – hospitals may be relevant.
b) Local data collection.
c) Local data collection.
Outcome:
a) Local data collection. The NHS Outcomes Framework 2011/12 indicators 5a – patient safety incident reporting, 5b – severity of harm, 5c – number of similar incidents, 5.4 – incidence of medication errors causing serious harm (not specific to end of life care).
b) Local data collection.

Definitions

The term ‘workers’ includes paid staff and volunteers.
Training includes formal, accredited training as well as informal or locally provided training. The level of education required for individual workers will depend on their role.
Guidance on workforce training requirements in different settings is available from the source references. Broadly, these recommend the following:
  • Curriculum content relating to end of life care contained within pre-registration and undergraduate education for health and social care.
  • Training programmes within hospitals, community settings, care homes, ambulance services and other health and social care settings including specialist palliative care services.
  • Taking into account communication skills (including issues around loss, grief and bereavement), spiritual care, assessment and care planning, advance care planning, and symptom management as they apply to end of life care.
  • Particular account should be taken of the training needs of those workers involved in discussing end of life issues with patients, families and carers.
  • Specialist palliative care services to act as an educational resource for training generalist palliative care in the community, including GP practices, district nursing services, care homes and community hospitals, and acute hospitals and other services.
  • Medical and district/community nursing out-of-hours workers should be competent in providing general palliative care, including symptom management, the use of syringe drivers, assessment of need, communication skills and providing support both to the patient and to carers in relation to ‘do not attempt cardiopulmonary resuscitation’ orders (also ‘do not attempt resuscitation’ orders), and advance decisions.
High-quality care and support is safe, effective and delivers a positive experience for people approaching the end of life and their families and carers.
Strategies for developing the workforce may include the use of End of Life Care for All (e-ELCA) (e-learning resource commissioned by Department of Health) in conjunction with face to face teaching, work-based learning and peer education.
Training needs within other appropriate settings not specified above, such as homeless hostels and prisons, should also be considered.
Examples of staff competencies in spiritual care are available from Marie Curie Cancer Care spiritual and religious care competencies for specialist palliative care. These outline four different competency levels for staff working in all areas of care, both specialist and non-specialist.

Workforce planning

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

Quality statement

Generalist and specialist services providing care for people approaching the end of life and their families and carers have a multidisciplinary workforce sufficient in number and skill mix to provide high-quality care and support.

Quality measure

See also quality measures and national indicators for further information.
Structure: Evidence of local service specification(s) that explicitly include generalist and specialist end of life care services in order to provide a multidisciplinary workforce to meet the needs of the local population identified in local needs assessment(s).
Outcome: See the overview for overarching outcomes.

What the quality statement means for each audience

Service providers (generalist or specialist) ensure that systems are in place to provide a multidisciplinary workforce sufficient in number and skill mix to provide high-quality care and support to people approaching the end of life and their families and carers.
Health and social care professionals work as part of a multidisciplinary workforce that provides high-quality care and support to people approaching the end of life and their families and carers.
Commissioners ensure they commission generalist and specialist palliative care services with a multidisciplinary workforce sufficient to provide high-quality care and support to people approaching the end of life and their families and carers.
People approaching the end of life and their families and carers receive high-quality care and support because there is enough staff with the right skills to meet their needs.

Source guidance

NICE cancer service guidance key recommendation 19 and recommendations 8.22 and 8.24.

Data source

Structure: Local data collection.
The National Council for Palliative Care undertakes a workforce survey looking at staff working in palliative care in a variety of settings.

Definitions

The terms ‘generalist’ and ‘specialist’ in relation to end of life care are defined on page 7). Broadly, generalist services include GPs, district nurses and general ward doctors and nurses. Specialist services deliver specialist palliative care, by palliative medicine physicians, clinical nurse specialists or specialist allied health professionals, for example, speech and language therapists. Specialists outside of palliative medicine may also be part of the multidisciplinary team, for example nephrologists, neurologists, cardiologists and geriatricians.
High-quality care and support is safe and effective and delivers a positive experience for patients, families and carers.
The End of life care strategy from the Department of Health recommends appropriate provision of essential services to meet the needs of the local population. These services include, but are not limited to:
  • nursing services (including visiting and rapid response services)
  • medical services
  • personal care services
  • access to pharmacy services
  • access to equipment
  • specialist palliative care.
NICE cancer service guidance recommends the following composition for specialist palliative care teams:
  • palliative medicine consultants
  • palliative care nurse specialists
  • a team secretary/administrator.
Furthermore, it recommends a range of expertise provided by:
  • physiotherapists
  • occupational therapists
  • dietitians
  • pharmacists
  • social workers
  • chaplains/spiritual care givers
  • professionals able to deliver psychological support equivalent to level 3 of the psychological support service model (see topic 5, psychological support services).
This expertise may be provided by named individuals on a full-time, part-time or regular sessional basis.
In Consultant physicians working with patients, the Royal College of Physicians recommends between 1.56 and 2.00 whole-time equivalent (WTE) consultants in palliative medicine per 250,000 population. Service requirements for specialist palliative care are detailed in quality statement 10.
The Department of Health document NHS chaplaincy: meeting the religious and spiritual needs of patients and staff, recommends the following for adequate chaplaincy provision:
  • Every 35 beds = 1 unit of chaplaincy-spiritual care.
  • Every 500 WTE staff = 1 unit of chaplaincy-spiritual care.
Each unit of chaplaincy-spiritual care is deemed to last for 3.5 hours. These units are intended to cover the general responsibilities of the healthcare chaplain – additional units are required for specific responsibilities.
Services should be efficiently coordinated in accordance with quality statement 8 on coordinated care, to ensure that multidisciplinary input does not become burdensome to people approaching the end of life and their families and carers or services themselves.

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.

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
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
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
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
aged 0-12 years – this includes neonates and infants
aged 0-12 years – this includes neonates and infants
when the child or young person is likely to die in hours or days
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
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
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: March 2017

© NICE 2017

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