Organisation and delivery of end of life care services for adults: NICE guidelines
NICE has released 2019 guidelines on End of life care for adults. All adults should have access to good care when they are nearing the end of their life. Providing good care benefits both them and the people who are important to them. This guideline covers organising and delivering end of life care services, which provide care and support in the final weeks and months of life (or for some conditions, years), and the planning and preparation for this. It aims to ensure that people have access to the care that they want and need in all care settings and also includes advice on services for carers.
Following are the major recommendations:
1. Identifying adults who may be approaching the end of their life, their carers and other people important to them
- 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 support people's preferences for where they would like to be cared for and die.
- 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.
2. Assessing holistic needs
- 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.
- 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.
- 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.
3. Supporting carers
- 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.
- 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.
4. Providing information
- 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.
- 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.
- 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.
5. Reviewing current treatment
- For advice on reducing treatment burden and reviewing medicines and other treatments, see the NICE guidelines on multimorbidity and medicines optimization.
- Develop policies for reviewing treatment within all specialities 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).
- 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 optimize care and improve their quality of life (for example, reducing the number of unnecessary routine appointments, organizing appointments close to the person's home, starting new treatments or stopping unhelpful treatments)
- community support available to help with their treatment.
6. Advance care planning
- 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.
- 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.
- 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.
- 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 the capacity to make decisions in line with the Mental Capacity Act 2005.
- For advice on supporting decision making, assessing mental capacity and advance care planning, see the NICE guideline on decision-making and mental capacity.
- For advice on starting advance care planning in adults who:
- are at risk of a medical emergency, see the NICE guideline on emergency and acute medical care in over 16s
- have motor neurone disease, see the NICE guideline on motor neurone disease
- have multimorbidity, see the NICE guideline on multimorbidity
- have dementia, see the NICE guideline on dementia
- have learning disabilities, see the NICE guideline on care and support of people growing older with learning disabilities.
- For advice on organ donation, see the NICE guideline on organ donation for transplantation.
7. Reviewing needs
- 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 a hospital or when the goals of treatment have changed.
8. Communicating and sharing information between services
- 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 organizations, to ensure good communication and a shared understanding of the person's needs and care.
- Use electronic information-sharing systems that are accessible between different services and organizations to enable information to be reviewed, updated and shared efficiently within and between multipractitioner teams, across different services and organizations.
- 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.
9. Providing multipractitioner care
- 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 minimize crises
- support people's preferences for where they would like to be cared for and die, if possible.
- 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.
10. Providing end of life care coordination
- 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.
- 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.
- 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.
- 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.
11. Transferring people between care settings
- For advice on transitions between care settings for adults with social care needs, see the NICE guideline on the transition between inpatient hospital settings and community or care home settings for adults with social care needs.
- Develop systems to support smooth and rapid transfer between care settings for adults approaching the end of their life. For example, organize 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.
- 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.
12. Providing out-of-hours care
- 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.
For more details click on the link: nice.org.uk
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