Rationale and impact
- Identifying adults who may be approaching the end of their life, their carers and people important to them
- Assessing holistic needs
- Supporting carers
- Providing information
- Reviewing current treatment
- Advance care planning
- Reviewing needs
- Communicating and sharing information between services
- Providing multipractitioner care
- Providing end of life care coordination
- Transferring people between care settings
- Providing out-of-hours care
These sections briefly explain why the committee made the recommendations and how they might affect services. They link to details of the evidence and a full description of the committee's discussion.
Identifying adults who may be approaching the end of their life, their carers and people important to them
Talking to people about dying can be difficult and there is often a reluctance to start conversations about preparing for the end of life. Although the evidence was limited, the committee agreed that identifying adults who may be approaching the end of their life supports health and social care practitioners to start discussions about advance care planning. This should ensure that the person near the end of life is provided with the support that they may need now or later to help them stay where they would like to be cared for and die. It also gives them time to consider and re‑evaluate their needs with their health and social care practitioners.
The committee wanted to emphasise the importance of identifying people systematically. There are already some systems in use for identifying people approaching the end of their life, which are given as examples in the recommendations. However, there were no studies comparing and evaluating their effectiveness in service delivery so the committee could not recommend a particular system.
The committee noted the importance of identifying people who are at particular risk of missing out on access to end of life care, including people living alone without support, people with learning difficulties and people who are homeless.
The committee agreed that using a shared coordination of care system would improve coordination of care between all health and social care practitioners involved in a person's care, and in turn improve service delivery.
The recommendations reflect current good practice available in some services, but there is variation in how and when people are identified across different patient groups and settings. The recommendations are expected to increase the number of people identified. The net impact on services is uncertain. Some investment will be required to establish systems to systematically identify patients in some areas. However, this will ensure that people approaching the end of their life will receive the appropriate care, and their carers will receive support, which will help to avoid unnecessary hospital admissions.
The evidence reviewed showed that early assessment was beneficial. However, the studies used different definitions for early and late assessment in various settings and so the evidence wasn't clear enough to recommend an optimal timing for an initial assessment. The committee agreed that an assessment with the person should be carried out to enable the right support to be provided when it is needed.
The evidence showed that carers' quality of life was improved and the burden of care reduced when carers are supported. The committee agreed that assessment of carers' needs is important to ensure they are supported to help care for the person approaching the end of their life. However, these assessments are often overlooked so the recommendation reminds healthcare practitioners that carers should be offered an assessment in line with legislation, and they should refer to social care practitioners accordingly.
The recommendations reflect current good practice available in some services, but there is some variation, for example, in ensuring access to carers' needs assessments.
The assessment of a person's needs will result in appropriate care being delivered. This may reduce some resource use when unnecessary interventions are stopped, but may increase the use of other resources if interventions for end of life care, such as symptom management or aids for daily living, are needed.
The number of carers being assessed may increase, but this should result in better support to help the person stay where they would like to be cared for and die, and may reduce the number of attendances and admissions to hospitals.
The information and support needs of carers will vary and the evidence did not identify one particular way of supporting carers. However, it did show that carers have better outcomes, such as maintaining quality of life and reduced carer burden, when supported. The committee agreed that health and social care providers should go beyond the strict statutory requirement for carers' assessments to ensure that the needs of carers are considered (including respite and psychological support), and that the varied needs of different carer groups are taken into account.
Increased investment may be needed for increased numbers of assessments and increased support accessed. This approach should result in better support for adults approaching the end of their life to stay where they would like to be cared for and die. The impact on hospital admission is uncertain. Increased support may reduce the number of hospital admissions or it may result in increased (and perhaps more appropriate) admissions.
Taking into account the individual support needs of young and older carers should reduce the physical and emotional strains that are often experienced by carers. This may help reduce the need for, and therefore costs of, interventions for physical and mental health problems common in these groups of carers.
The evidence showed that a lack of knowledge about end of life care and the support and services available, and poor communication between adults approaching the end of their life and health and social care practitioners, are barriers to understanding treatment options and confidently making decisions about care.
Based on this evidence and the committee's experience, the recommendations reflect the importance of systematically seeking and acting on the information needs and preferences of people approaching the end of their life, their carers and other people important to them. The committee also acknowledged that people's information needs will vary and change over time, so regular reviews are needed and referral to specialist communication support could be needed.
The committee also noted that service providers across the NHS and adult social care system should follow the NHS England Accessible Information Standard to ensure that the information and communication support needs of disabled people are met.
The recommendations reflect good current practice available in some services, but there is variation nationally.
Improving understanding and communication will benefit services, ensuring that people make informed decisions and receive the appropriate care.
There was no evidence identified on how and when to carry out an initial review of service provision for people approaching the end of their life. However, the committee agreed that it was important for all lead healthcare professionals responsible for the person's care to review and discuss the person's current care needs with them. In particular, they discussed identifying services that may be needed or could be stopped, and acknowledged that the involvement of too many services can be as problematic as too few.
The committee also agreed that adapting care for treating conditions in adults needing end of life care would help to ensure that the right care is provided at the right time. Policies within different specialties would support this, and the committee were aware that these have been developed for some specialist areas, such as diabetes (see Diabetes UK End of life diabetes care: clinical care recommendations) and for neurological conditions. To encourage more research in this area, the committee developed research recommendations on early review of service provision and referral to additional specialist palliative care services and frequency of community-based reviews.
The recommendations reflect current good practice available in some services, but there is variation nationally. Reviewing current treatment of people approaching the end of their life means appropriate care will be given and may reduce the burden of unnecessary appointments and treatments.
The evidence for advance care planning was unclear, although it did show some benefit in supporting people to stay where they would like to be cared for and die. The committee acknowledged that the implementation of advance care planning is complex and agreed that there was not enough evidence to recommend a specific service model for advance care planning. However, the committee agreed that advance care planning helps people to achieve the care and support they want, and that policies should be in place to provide it to adults approaching the end of their life. They noted that some under-served and vulnerable groups (for example, people who are homeless and people in prison) may not have opportunities to engage in advance care planning, and that provision for these groups should be highlighted. The committee also felt that advance care planning should not be restricted to planning for possible future loss of mental capacity.
The evidence on barriers to care described how carers felt a lack of control and a lack of trust in health and social care practitioners, resulting in scepticism about the benefits of advance care planning. The committee agreed that better communication and processes to involve carers in advance care planning would help to address this.
Evidence suggested that individual patient-held records did not improve patient satisfaction with communication. However, the committee agreed that a copy of the advance care plan available in the person's home may be useful for health and social care practitioners to refer to in emergency situations when access to other information is unavailable.
The recommendations reflect good current practice available in some services, but there is variation in the timing and availability of advance care planning in different areas and for different patient groups.
Advance care planning supports adults approaching the end of their life to be cared for and die in their preferred place, which is often in the community. This may reduce the need for hospital services but increase demand for services in the community. The advance care plan documents the person's current, future and emergency needs, improving coordination of care across the multipractitioner team and should help avoid unnecessary hospital attendances and admissions.
There was no evidence to indicate the best time to undertake reviews of service provision for people approaching the end of their life. Every person's journey is individual, reflecting how their health can fluctuate unpredictably, with periods of deterioration, stabilisation and sometimes improvement. In addition, their psychological, social, financial and other support needs will vary, not always in step with the physical illness. The committee therefore agreed that regular reviews of care are important when people are approaching the end of their life to identify when changes in care or other forms of support are needed, for example, when the goals of disease-modifying treatment change.
The committee recognised that regular discussions with the care team would help to identify changes in the person's needs and preferences. They also agreed that repeating holistic needs assessments and reviews of advance care plans would ensure that people continue to receive the right care and support.
The recommendation reflects current good practice available in some services, but there is variation nationally. Reviewing the ongoing care of people approaching the end of their life means that appropriate care will be given and may reduce some resource use when unnecessary interventions are stopped.
The committee agreed that electronic information systems should be used because they would be the most effective and efficient method to share information. However, the evidence was too limited for the committee to recommend a particular system. The committee developed a research recommendation on electronic registers and information-sharing databases to encourage further research in this area.
The committee did not have the evidence to recommend what information should be shared, but agreed that everyone involved in a person's care should have access to relevant health and social care information, including the person's care plan.
The recommendations are underpinned by the Health and Social Care (Safety and Quality) Act 2015, which introduced a legal duty requiring health and social care bodies to share information when this will facilitate care.
The recommendations reflect current good practice available in some services. The use of electronic-based systems to coordinate the care of people approaching the end of their life has been increasing across England and Wales. The committee agreed that there is variation in the implementation of these systems across the NHS and investment would be needed in areas without systems in place. The committee considered that electronic systems would result in more efficient, well-coordinated care through better access to information, reducing duplication and improving communication.
The evidence showed that a multipractitioner approach to care was favourable and had a positive impact on supporting adults to stay where they would like to be cared for and die. The committee agreed that the skills and expertise of many specialties and disciplines is needed to meet people's varied and changing needs. However, there is no clear evidence on the ideal composition of a multipractitioner team and so instead of identifying specific roles, the committee set out the type of support people may need access to as they approach the end of their life.
The recommendations reflect current good practice available in some services, but there is variation nationally. Care that meets the person's identified needs and is delivered by health and social care practitioners with the relevant skills may reduce costs by minimising crises and helping to avoid emergency unplanned care and unnecessary hospital attendances and admissions. However, this will require some investment upstream.
The evidence on identifying barriers to accessing services showed that continuity and coordination of care are often identified as being unsatisfactory for adults approaching the end of their life and their carers. The evidence also highlighted a lack of information and poor communication with carers, which could be improved with better coordination of care.
The committee agreed that good coordination of care and effective communication systems are especially important when people have contact with multiple services and organisations and for under-served and vulnerable groups.
The committee also agreed that good coordination of care should include systems to review appointments and home visits, both to support efficiency of care and also to avoid overwhelming the person with multiple visits from different services.
The evidence showed that having someone to organise care was of some benefit, particularly in reducing unscheduled and emergency hospital visits and admissions. However, it was not clear if this should be a specific role or who should do this. Therefore, the committee listed the key principles within end of life care coordination that community, hospital and hospice services could provide in collaboration rather than specifying who should take on this role and where it should be located.
The recommendation reflects current good practice available in some services, but there is variation nationally. In areas where good coordination of care is lacking, it should result in more efficient service provision and help to minimise crises, and support people to stay where they would like to be cared for and die. Good care coordination should also reduce the use of unnecessary services and avoid duplication of care.
Care coordination by health and social care professionals is taking place currently in the NHS but the committee was uncertain how extensively it is practised. Additional resources may be needed to coordinate care across services and deliver the key roles of end of life care coordination, but it should help to reduce the use of unnecessary services and avoid duplication of care.
There was very little evidence on transferring adults between settings when they are approaching the end of their life. However, the committee agreed that the availability of efficient and timely transfer is important to ensure that people can be moved quickly, when needed, to where they would like to be cared for and die.
The committee also discussed the consequences of delayed transfer, which can result in people staying in inappropriate care settings or being cared for and dying in settings other than where they would like to be cared for and die. They also discussed how clear communication and processes between services providing care and those providing transport can help to avoid delays and enable efficient transfer.
The committee developed recommendations to reinforce good practice and support the advice in NICE's guideline on transition between inpatient hospital settings and community or care home settings for adults with social care needs. The committee also noted that more research is needed to determine the optimal service configuration for transfer of people with different conditions and at different stages as people approach the end of their life (see the research recommendation on discharge and transfer from hospital).
The committee also agreed that poor and slow access to care packages and equipment can delay transfer between settings and prevent people from being cared for and dying in their preferred place, so highlighted the need to organise this support to enable timely transfer.
Effective and timely transfer is likely to reduce the number of people dying in hospital, because most people wish to die in a community setting (for example, their own home or care home, or in a hospice). This may reduce the need for hospital services but increase demand for services in the community.
The evidence for providing an out-of-hours service showed some benefit in supporting people to stay where they would like to be cared for and die. The committee agreed that the services described in the studies reflected existing out-of-hours services in areas of good practice. However, there was evidence that elements of service provision important for people approaching the end of their life may be variable or lacking, so these were the focus for the recommendation.
The evidence supported the committee's experience that access to healthcare advice is critical in providing reassurance and ensuring people have access to the services they need. The committee agreed that a healthcare practitioner should be available at all times to provide this, and that they would need access to the person's records and advance care plan, preferably through a shared electronic information system, to enable them to make informed decisions about care.
Evidence exploring the views of people approaching the end of their life and their carers highlighted the importance of having access to advice from someone who has expertise and understands their needs. The committee agreed that an out-of-hours end of life care advice line could help to provide this support.
Another common concern for people at the end of life and their carers is the limited provision of pharmacy services outside traditional working hours. The committee discussed how a lack of access to medicines that may be needed quickly can result in people being transferred and admitted to hospital.
An analysis of the evidence for providing a dedicated out-of-hours end of life care advice line and an out-of-hours pharmacy service showed that the costs of providing these services could be balanced by the savings incurred by a relatively small reduction in emergency admissions and length of stay of admissions, and an increase in the number of people remaining in the community. The committee noted that the net resource impact of caring for people in the community is uncertain. On balance, they felt that providing out-of-hours care was a good use of resources and key to meeting the needs of patients.
Current provision of out-of-hours services is variable nationally, but the recommendation reflects current good practice in some areas. The committee are uncertain how extensively it is practised. Where services such as an out-of-hours pharmacy service or dedicated end of life care advice line are lacking, increased resources may be needed to set up these services. However, this is likely to reduce the number of people being transferred to hospital for care that could be given at home. This may reduce the need for hospital services but increase demand for services in the community.