Recommendations

People have the right to be involved in discussions and make informed decisions about their care, as described in your care and in shared decision making.

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.

End of life care includes the care and support given in the final weeks and months of life, and the planning and preparation for this. For some conditions, this could be months or years.

This includes people with:

  • advanced, progressive, incurable conditions

  • general frailty and coexisting conditions that mean they are at increased risk of dying within the next 12 months

  • existing conditions if they are at risk of dying from a sudden acute crisis in their condition

  • life-threatening acute conditions caused by sudden catastrophic events.

This guideline does not cover the clinical care of adults who are expected to die within a few hours or days. For advice on this, see the NICE guideline on care of dying adults in the last days of life.

1.1 Identifying adults who may be approaching the end of their life, their carers and other people important to them

1.1.1 People managing and delivering services should develop systems to identify adults who are likely to be approaching the end of their life (for example, using tools such as the Gold Standards Framework, the Amber Care Bundle or the Supportive and Palliative Care Indicators Tool [SPICT]). This will enable health and social care practitioners to start discussions about advance care planning, provide the care needed, and to support people's preferences for where they would like to be cared for and die.

1.1.2 Health and social care practitioners should identify carers and other people important to adults who are likely to be approaching the end of their life.

To find out why the committee made the recommendations on identifying adults who may be approaching the end of their life, their carers and other people important to them, and how they might affect services, see rationale and impact.

1.2 Assessing holistic needs

1.2.1 If it is thought that an adult is approaching the end of their life, carry out an initial holistic needs assessment with the person and document this. This will enable the right support to be provided when it is needed.

1.2.2 People managing services should ensure that health and social care practitioners caring for adults approaching the end of their life have the training and skills to sensitively carry out holistic needs assessments.

1.2.3 Healthcare practitioners should be aware of the requirement to offer a carer's needs assessment in line with the Care Act 2014 and a young carer's needs assessment in line with the Children and Families Act 2014.

To find out why the committee made the recommendations on assessing holistic needs and how they might affect services, see rationale and impact.

1.3 Supporting carers

1.3.1 People managing and delivering services should think about what practical and emotional support can be provided to carers of adults approaching the end of their life and review this when needed[1].

1.3.2 When carers' needs are identified, take into account that the support needs of a young carer are likely to be different to those of an older carer.

To find out why the committee made the recommendations on supporting carers and how they might affect services, see rationale and impact.

1.4 Providing information

1.4.1 For advice on communication, information and shared decision making, see the NICE guidelines on patient experience in adult NHS services and people's experience in adult social care services. Apply the same principles for communication and information giving to carers of all ages.

1.4.2 For people with learning disabilities, use this guideline alongside the recommendations on end of life care in the NICE guideline on care and support of people growing older with learning disabilities.

1.4.3 Support and enable adults approaching the end of their life to actively participate in decision making by having in place:

  • processes to establish the amount and type of information they would prefer

  • systems to provide information in a way that meets their communication needs and preferences, for example, how it is given (verbally, on paper, by text, email, or other assistive technologies) and provision of professional interpreters

  • arrangements to review and anticipate their information needs and preferences as circumstances change.

To find out why the committee made the recommendations on providing information and how they might affect services, see rationale and impact.

1.5 Reviewing current treatment

1.5.1 For advice on reducing treatment burden and reviewing medicines and other treatments, see the NICE guidelines on multimorbidity and medicines optimisation.

1.5.2 Develop policies for reviewing treatment within all specialties to meet the changing needs of adults approaching the end of their life and to reduce the burden of unhelpful treatments. Different services should work together and share information about treatment reviews (see section 1.10 on providing end of life care coordination).

1.5.3 The lead healthcare professional should ensure that the person approaching the end of their life is offered opportunities to discuss their existing treatment plans with a healthcare professional. The person's carers and other people important to them should be included in the discussions, if the person agrees. This should include discussing:

  • any changes that could optimise care and improve their quality of life (for example, reducing the number of unnecessary routine appointments, organising appointments close to the person's home, starting new treatments or stopping unhelpful treatments)

  • community support available to help with their treatment.

To find out why the committee made the recommendations on reviewing current treatment and how they might affect services, see rationale and impact.

1.6 Advance care planning

1.6.1 Service providers should develop policies to ensure that advance care planning is offered to adults who are approaching the end of their life. Policies should take into account under-served and vulnerable groups.

1.6.2 Service providers should develop processes to support carers and other people important to the person to be involved in advance care planning, if the person approaching the end of their life agrees.

1.6.3 Service providers should have systems in place to ensure that adults approaching the end of their life each have a copy of their advance care plan available in their place of residence or with them if admitted to a hospital, care home or hospice.

1.6.4 Service providers should develop processes to take into account the views of carers and other people important to the person if the person approaching the end of their life lacks capacity to make decisions in line with the Mental Capacity Act 2005.

1.6.5 For advice on supporting decision making, assessing mental capacity and advance care planning, see the NICE guideline on decision-making and mental capacity.

1.6.6 For advice on starting advance care planning in adults who:

1.6.7 For advice on organ donation, see the NICE guideline on organ donation for transplantation.

To find out why the committee made the recommendations on advance care planning and how they might affect services, see rationale and impact.

1.7 Reviewing needs

1.7.1 Develop systems enabling adults approaching the end of their life to have:

  • regular discussions with a member of their care team about changes in their health and social care needs and preferences

  • repeat assessments of their holistic needs and reviews of their advance care plan when needed, for example at key transition points, such as at discharge from hospital or when the goals of treatment have changed.

To find out why the committee made the recommendation on reviewing needs and how it might affect services, see rationale and impact.

1.8 Communicating and sharing information between services

1.8.1 Adults approaching the end of their life should have care that is coordinated between health and social care practitioners within and across different services and organisations, to ensure good communication and a shared understanding of the person's needs and care.

1.8.2 Use electronic information-sharing systems that are accessible between different services and organisations to enable information to be reviewed, updated and shared efficiently within and between multipractitioner teams, across different services and organisations.

1.8.3 For specific advice on coordinating end of life support in residential settings, see the NICE guideline on people's experience in adult social care services.

To find out why the committee made the recommendations on communicating and sharing information between services, and how they might affect services, see rationale and impact.

1.9 Providing multipractitioner care

1.9.1 Provide access to the expertise of highly skilled health and social care practitioners, when needed, for adults approaching the end of their life, their carers and other people important to them. They should have the skills to:

  • meet complex care and support needs

  • anticipate and prevent or minimise crises

  • support people's preferences for where they would like to be cared for and die, if possible.

1.9.2 Health and social care practitioners should have the skills to provide care for adults approaching the end of their life who need support in the following areas:

  • disease-specific, including symptom management, hydration and nutrition, and access to medication

  • physical

  • psychological

  • social, including support and advice (for example, signposting advice on benefits, finance and third-sector, local or national support services)

  • support with activities of daily living, including access to equipment and rehabilitation services

  • pastoral, religious and spiritual

  • cultural.

To find out why the committee made the recommendations on providing multipractitioner care and how they might affect services, see rationale and impact.

1.10 Providing end of life care coordination

1.10.1 Provide end of life care coordination for adults who are approaching the end of their life through:

  • community and primary care services for adults, provided by the person's GP or another health or social care practitioner in the primary or community care team

  • hospital services for adults whose treatment is based in secondary or tertiary care, provided by health and social care practitioners based in hospices or disease-specific specialists in hospitals.

1.10.2 For people in under-served and vulnerable groups who are approaching the end of their life, provide additional support that takes into account the challenges of coordinating care for people in these groups.

1.10.3 Ensure that there is good communication between health and social care practitioners coordinating community-based care and health and social care practitioners coordinating hospital care.

1.10.4 Health and social care practitioners providing end of life care coordination should:

  • offer information to the person approaching the end of their life, their carers and others important to them, about who the multipractitioner team members are (including the lead healthcare professionals in each setting responsible for their care), the roles of the team members and how services are accessed

  • ensure that holistic needs assessments are offered, and the person's wishes and needs are discussed and acted on whenever possible

  • ensure that care is coordinated across and between the multipractitioner teams and between care settings

  • ensure that regular discussions and reviews of care, holistic needs and advance care plans are offered

  • share information about the person's care between members of the multipractitioner teams.

To find out why the committee made the recommendations on providing end of life care coordination and how they might affect services, see rationale and impact.

1.11 Transferring people between care settings

1.11.1 For advice on transitions between care settings for adults with social care needs, see the NICE guideline on transition between inpatient hospital settings and community or care home settings for adults with social care needs.

1.11.2 Develop systems to support smooth and rapid transfer between care settings for adults approaching the end of their life. For example, organise services so that:

  • ambulances or other transport services can move people between care settings without delay and in an efficient and compassionate way

  • care packages and equipment are available to enable adults approaching the end of their life to move to the place where they would like to be cared for and die.

1.11.3 Develop an agreed transfer policy between ambulance service providers and acute care providers to enable the rapid transfer of adults approaching the end of their life to the place where they would like to be cared for and die whenever rapid transfer is a priority.

To find out why the committee made the recommendations on transferring people between care settings and how they might affect services, see rationale and impact.

1.12 Providing out-of-hours care

1.12.1 Adults approaching the end of their life, their carers and other people important to them should have access to:

  • a healthcare professional available 24 hours a day, 7 days a week, who can access the person's records and advance care plan, and make informed decisions about changes to care

  • an out-of-hours end of life care advice line

  • an out-of-hours pharmacy service that has access to medicines for symptom management in adults approaching the end of their life.

To find out why the committee made the recommendation on providing out-of-hours care and how it might affect services, see rationale and impact.

Terms used in this guideline

Advance care planning

Advance care planning is a voluntary process of discussion about future care between an individual and their care providers, irrespective of discipline.

An advance care planning discussion might include:

  • the individual's concerns and wishes

  • their important values or personal goals for care

  • their understanding about their illness and prognosis

  • their preferences and wishes for types of care or treatment that may be beneficial in the future and the availability of these.

Advance care planning is one part of the process of personalised care and support planning.

Approaching the end of life

People in the final weeks and months of life, although for people with some conditions, this could be months or years.

It includes people with:

  • advanced, progressive, incurable conditions

  • general frailty and coexisting conditions that mean they are at increased risk of dying within the next 12 months

  • existing conditions if they are at risk of dying from a sudden acute crisis in their condition

  • life-threatening acute conditions caused by sudden catastrophic events.

Carers

A carer is someone who helps another person, usually a relative, partner or friend, in their day-to-day life. This term does not refer to someone who provides care professionally or through a voluntary organisation. A young carer is aged under 18.

People managing services

Commissioners, planners and service providers responsible for overseeing local health and social care provision and accountable for public service outcomes.

Holistic needs assessment

An assessment that considers all aspects of a person's wellbeing, their spiritual and health and social care needs. Undertaking a holistic needs assessment ensures that the person's concerns and problems are identified so that support can be provided to address them. There are validated tools that can be used to support the assessment process.

Lead healthcare professional

A lead healthcare professional is a member of the multipractitioner team who assumes overall clinical responsibility for the delivery of care to a patient. They are usually a senior doctor or senior nurse.

Multipractitioner team

A multipractitioner team is a group of practitioners from different clinical professions, disciplines, organisations and agencies who together make decisions on the recommended treatment for individual patients.

People important to adults approaching the end of their life

These may include family members and anyone else who the person regards as significant, such as a partner or close friend. It may be someone who the person wants involved in discussions about their care. It is important that health and social care practitioners understand that assumptions should not be made when asking about the people important to the person, for example, assuming everyone is in a heterosexual relationship.

Personalised care and support planning

Personalised care and support planning is a series of facilitated conversations in which the person, or those who know them well, actively participates to explore the management of their health and wellbeing within the context of their whole life and family situation.

Personalised care and support planning is key for people receiving health and social care services. It is an essential tool to integrate the person's experience of all the services they access so they have one joined-up plan that covers their health and wellbeing needs.

Personalised care and support planning is not to be confused with personalised medicine. The latter is the approach to tailor treatments to people's individual health needs based on their biological risk factors and predictors of response to treatments.

Service providers

All organisations (including primary, secondary, tertiary, ambulance and hospice services) that provide NHS services for people approaching the end of their life.

Shared decision making

Shared decision making is when health and social care professionals and patients work together. This puts people at the centre of decisions about their own treatment and care. During shared decision making, it's important that:

  • care or treatment options are fully explored, along with their risks and benefits

  • different choices available to the patient are discussed 

  • a decision is reached together with a health and social care professional.



[1] NICE is developing a guideline on supporting adult carers with publication expected in Januray 2020.

[2] NICE is developing a guideline on social work interventions for adults with complex needs, including, learning disabilities and mental health, with publication expected in January 2022.

  • National Institute for Health and Care Excellence (NICE)