End of Life Procedures and Practice Guidance

1. Using this Procedure

This procedure has been written to support social care and social work practitioners when a person:

  1. May be approaching end of life; or
  2. Is already receiving end of life services (including palliative care).

2. Defining End of Life

When end of life applies

End of life applies when:

  1. A person (who is over the age of 18); is
  2. Likely to die within the next 12 months.

This includes people:

  1. Whose death is imminent;
  2. Who have an advanced, progressive or incurable condition;
  3. Who have general frailty and co-existing conditions that mean they are expected to die within 12 months;
  4. Who have an existing condition with a risk that they could die from a sudden acute crisis in their condition; and
  5. People with life-threatening acute conditions caused by sudden catastrophic events.

Deciding if a person is approaching end of life

Decisions about a person's end of life status must be made by a Clinician with appropriate skills and knowledge of the person, and of their condition to make such a prognosis.

End of life and residence

End of life procedures could apply to anyone, regardless of the type of setting they are staying or living in, including:

  1. An acute hospital;
  2. A hospice;
  3. A care home;
  4. Their own home (either owned or rented); or
  5. Supported living accommodation (including extra care, supported living or shared lives).

The purpose of any end of life intervention

Put simply, the purpose of any end of life intervention is to help the person to live as well as possible and to die with dignity.

The following are the key objectives of end of life care:

  1. To enhance quality of life for people with long-term conditions;
  2. To ensure that people have a positive experience of care;
  3. To ensure people are treated and cared for in a safe environment and that they are protected from avoidable harm.

End of life Care and Support

There are a range of Care and Support interventions that can be provided to a person who is approaching end of life. These include, but are not limited to:

  1. Supporting the person (and their family) to understand how the Mental Capacity Act can help the person plan and make their own decisions, including Advance Decisions to Refuse Treatment and Lasting Powers of Attorney;
  2. Help to access appropriate legal or financial services through effective signposting (for example benefit support);
  3. Support with housing related matters, including to maintain a tenancy and the swift assessment of any potential need to adapt an environment, or to move to a more suitable environment;
  4. Ensuring access to equipment in a timely way so that risk is managed, carers are supported and independence promoted for as long as possible;
  5. Support to meet social needs, in order to reduce isolation, support emotional well being and maintain important relationships;
  6. Ensuring personal care needs are met by people with the right skills to meet complex or changing needs;
  7. Supporting the person's family and friends, with good information and advice, statutory carer's services and access to bereavement support; and
  8. Proactively safeguarding people whose circumstances are known to make them vulnerable.
Depending on the person's needs and circumstances adult Care and Support interventions can take place outside of, or as part of the provision of a general or specialist palliative care approach.

3. Palliative care

Defining palliative care

Palliative care is a multidisciplinary approach, involving a small team of professionals' coordinating a joint treatment plan to:

  1. Treat or manage pain; and
  2. Treat or manage other physical symptoms; and
  3. Support a person with psychological, spiritual or social needs; so that
  4. They are as comfortable as possible living with their condition.

Some types of palliative care are:

  1. Pain management medication;
  2. Therapies (Physiotherapy/Occupational Therapy);
  3. Counselling.

Depending on the person's needs and circumstances adult Care and Support interventions can take place outside of, or as part of the provision of a general or specialist palliative care service.

When palliative care can be provided

Palliative care is often used when a person is approaching end of life, but can be provided at any point after the person has been diagnosed with an incurable condition. This means there will be:

  1. People who receive palliative care during end of life; and
  2. People who receive palliative care for many years.

General palliative care

General palliative care describes the palliative care that is provided during periods where the person's needs are relatively stable and can normally be managed in the community.

You may find yourself part of a general palliative care approach if:

  1. The Local Authority is meeting all of the person's eligible needs; or
  2. The Local Authority and the ICB are meeting needs jointly; or
  3. You are providing relevant professional support to a person whose needs are being met by the ICB.

Specialist palliative care

Specialist palliative care is provided by a dedicated team of professionals with specific skills and knowledge in the area. It encompasses hospice care, and rapid response palliative care. It is normally needed when the person's symptoms became more complex and can no longer be managed in a timely way through general palliative care. The deterioration in needs can be sudden, or can take place over time.

4. NHS Continuing Healthcare and NHS-funded Nursing Care

NHS Continuing Healthcare

NHS continuing healthcare (sometimes called fully funded NHS care) is care outside of hospital that is arranged and funded entirely by the NHS.

Being given end of life status by a Clinician does not in itself mean that a person will be eligible for NHS Continuing Healthcare unless:

  1. They have needs that are complex, unpredictable and intense; and
  2. A full assessment of eligibility for NHS Continuing Healthcare has been carried out; and
  3. They are eligible.

If you believe that a person may be eligible for NHS Continuing Healthcare you should follow the NHS Continuing Healthcare procedure, which can be accessed by clicking here.

If the person is eligible

If a person receiving Care and Support from the Local Authority under the Care Act is found to be eligible for NHS Continuing Healthcare:

  1. All legal responsibilities for arranging, funding and reviewing their care transfer to the NHS; although
  2. You may still be required to provide relevant professional support to the person or their family as part of a general palliative care team.
Need to Know
If a person is eligible for NHS Continuing Healthcare the Local Authority remains responsible for meeting the eligible needs of any carers.

If the person is not eligible

If a person is not deemed eligible for NHS Continuing Healthcare the responsibility for arranging and managing all of their support and services will remain with the Local Authority (although services can be funded in part by the ICB if this is the recommendation of the NHS Continuing Healthcare panel).

Need to Know
If a person approaching end of life is not eligible for NHS Continuing Healthcare you should consider the need to complete further checklists as their health needs increase.
Need to Know
A person's eligibility for NHS Continuing Healthcare can fluctuate during end of life. If they become eligible it is therefore prudent to maintain an element of adult Care and Support involvement wherever possible, so that a swift response to any assessment or support request can be provided.

NHS-funded Nursing Care

NHS-funded Nursing Care (sometimes called Funded Nursing Care or FNC) is a weekly financial contribution made by the NHS towards the cost of registered nursing care provided in a care home setting.

NHS-funded Nursing Care is available for people:

  1. From the age of 18; who
  2. Are not eligible for NHS Continuing Healthcare; but
  3. Who have eligible nursing needs; and
  4. Those needs are most appropriately met by a Registered nurse in a care home environment.

If a person approaching end of life is likely to have eligible nursing needs you should take steps to complete the NHS Continuing Healthcare checklist and make a referral to the ICB for their eligibility for NHS-funded Nursing to be considered.

Click here to access the NHS-funded Nursing Care procedure.

5. Identifying someone who may be Approaching End of Life

Using this section of the procedure

This section of the procedure should be used by practitioners when:

  1. They believe that a person may be approaching end of life; and
  2. The person's end of life status has not yet been considered by a Clinician; or
  3. The person's health has deteriorated since their end of life status was last considered.

Why identification is important

It is important that people who may require end of life care or treatment are identified in a timely way, because:

  1. This ensures a multidisciplinary approach to their care and treatment; and
  2. Increases the likelihood that any care or treatment provided to them will be aligned with their needs and preferences.

If a person may be approaching end of life

If you believe that a person may be approaching end of life you should:

  1. Seek the support of your line manager as required;
  2. Speak to the person about your beliefs in a sensitive yet open way; and
  3. Recommend that the person discusses end of life with their GP or Clinician; or
  4. Obtain consent to discuss their circumstances with their GP or Clinician; and
  5. Consider the need to complete a NHS Continuing Healthcare checklist.

If a person declines to discuss end of life

Talking about end of life can be extremely challenging for the person and their family.

Conversations about end of life should be sensitive and should only take place:

  1. When there is a clear benefit to the person in doing so at that particular time; or
  2. At the person's request.

Under no circumstances should you place undue pressure on a person to talk about end of life if:

  1. They have told you they do not wish to discuss it;
  2. It is clear they are not ready to talk about it (for example they are distressed); or
  3. You do not possess the skills or knowledge to have a sensitive and open conversation.

If it is not appropriate to discuss end of life at the current time you must:

  1. Not discuss it;
  2. Consider a more appropriate time/way to have the conversation;
  3. Consider whether the appointment of an advocate would be helpful to support future conversations; and
  4. Continue to provide all adult Care and Support services that the person is entitled or eligible for under the Care Act.

You should speak with a line manager if you are concerned about your skills or knowledge around end of life before having any conversations about this with the person or their family.

The responsibility for deciding

Decisions about a person's end of life status must be made by a Clinician with appropriate skills and knowledge of the person, and of their condition to make such a prognosis.

If a person is approaching end of life

If a Clinician decides that the person is approaching end of life it is their responsibility to:

  1. Record the person's details on the local EPaCCS register; and
  2. Arrange for any relevant health assessment to be carried out; and
  3. Decide the best way to manage and treat the person's health needs; including
  4. Whether the person would benefit from a palliative care approach; and
  5. If so, make arrangements for palliative care to be provided.

You must continue to provide all adult Care and Support services that the person is entitled or eligible to receive under the Care Act, unless:

  1. The person is to be provided with all their care or treatment in an NHS facility (e.g. a hospice); or
  2. The person is eligible for NHS Continuing Healthcare; and
  3. You will not be providing relevant professional support to the person or their family as part of a general palliative care approach.
Need to Know

The Electronic Palliative Care coordination Systems (EPaCCS) register is a NHS recording system that holds key information about people who have been identified as approaching end of life, for example:

  1. The palliative care arrangements that may be in place; and
  2. The person's preferences about end of life care and place of death.
Need to Know
If a person is being treated in an NHS facility, or through NHS Continuing Healthcare the Local Authority remains responsible for meeting the eligible needs of any carers.

If a person is not approaching end of life

If a Clinician decides that the person is not approaching end of life you must continue to provide all adult Care and Support services that the person is entitled or eligible for under the Care Act.

If the person's health deteriorates you should talk again with them about having a further conversation with the Clinician about their end of life status.

6. Providing Information and Advice

Providing information about end of life

You are expected to be able to provide accessible information and advice about end of life whenever:

  1. A person/carer asks for it; or
  2. You have identified that a person may be approaching end of life.

The following is a list of all the information that you should be able to provide:

  1. What 'end of life' means;
  2. What a palliative care approach is;
  3. The benefits/risks of being/not being registered on the EPaCCS register;
  4. How decisions about end of life are made; and
  5. Where relevant, information about NHS Continuing Healthcare and NHS-funded Nursing Care.

You should speak with a line manager if you are concerned about your skills or knowledge around end of life before providing advice or completing any NHS Continuing Healthcare checklist.

If a person declines to discuss end of life

Talking about end of life can be extremely challenging for the person, and their family.

Conversations about end of life should be sensitive and should only take place:

  1. When there is a clear benefit to the person in doing so at that particular time; or
  2. At the person's request.

Under no circumstances should you place undue pressure on a person to talk about end of life if:

  1. If they have told you they do not wish to do so;
  2. It is clear they are not ready to do so (for example they are distressed); or
  3. If you do not possess the skills or knowledge to have a sensitive and open conversation.

If it is not appropriate to discuss end of life at the current time you must:

  1. Not discuss it;
  2. Consider a more appropriate time/way to have the conversation;
  3. Consider whether the appointment of an advocate would be helpful to support future conversations; and
  4. Continue to provide all adult Care and Support services that the person is entitled or eligible for under the Care Act.

You should speak with a line manager if you are concerned about your skills or knowledge around end of life before having any conversations about this with the person or their family.

Providing other relevant information and advice

The information and advice that is provided to a person who is approaching end of life should reflect the wider purpose of all end of life interventions, in that it should:

  1. Help them to live as well as possible;
  2. Enhance their quality of life;
  3. Support them to have a positive experience of care;
  4. Ensure they are protected from avoidable harm; and
  5. Help them to die with dignity.

You are expected to be able to provide accessible and practical information and advice whenever:

  1. A person/carer asks for it; or
  2. You have identified that it will be beneficial.

The following is a list of all the information that you should be able to provide:

  1. Information about the Mental Capacity Act, and how it can be used to help the person plan and make their own decisions, including Advance Decisions to Refuse Treatment and Lasting Powers of Attorney;
  2. Information about, and signposting to appropriate legal or financial services (for example benefit support);
  3. Information about housing options, including adaptations and other accommodation that could meet eligible needs;
  4. Advice about equipment options and how to maintain independence;
  5. Information and advice about the range of services that could meet changing needs;
  6. Information about services and support to reduce social isolation;
  7. Information about carer's services and support (including carer's assessment and bereavement support).

Depending on the person's needs and circumstances the provision of information and advice about adult Care and Support can take place outside of, or as part of the provision of a general or specialist palliative care approach.

All information and advice should be provided in a timely way to optimise the likelihood of any potential benefit to the person.

7. Good Practice Guidance for End of Life

Using this section of the procedure

This section of the procedure provides information and guidance about:

  1. Common core principles for end of life practice,
  2. Practitioner competencies for end of life; and
  3. Practice recommendations.

It should be used by practitioners working:

  1. In general adult Care and Support; or
  2. As part of a general palliative care approach; or
  3. As part of a specialist palliative care team; when
  4. A person is approaching end of life.

The Social Care Institute for Excellence End of Life Hub

This online resource contains clear practice examples, good practice recommendations and access to a range of resources for social care practitioners working in the area of end of life.

Click here to access it.

The Skills for Care Common Core Principles and Competencies

The Skills for Care document 'Common Core Principles and Competencies for Social Care and Health Workers working with Adults at the End of their Life' is a framework that will support you to be competent and feel confident working with people during end of life interventions.

The document sets out 7 core principles for practice, and provides valuable guidance to support each to be met.

Principle Guidance
1. Care and support is planned and delivered in a person-centred way, with the person's priorities, including spiritual, emotional and cultural needs, guiding all decisions and actions.
2. Communication is straightforward, appropriate and timely, and is delivered sensitively, taking account of the circumstances, needs and abilities of the person and their carers. Communication reflects an understanding of, and respect for, the person's cultural and spiritual needs
3. End of life care is provided through integrated working, with practitioners collaborating to ensure seamless care and support at the point of delivery. Needs are met in ways that are appropriate to the person, rather than being service-led. Workers maintain ongoing communication so that care and support is properly coordinated and responsive to changing circumstances and priorities.
4. Good, clear and straightforward information is provided to the person and their carers.
5. Regular reviews and effective communication ensure that care and support is responsive to the needs and changing circumstances of people at the end of life, and their carers. Forward planning, including advance care planning, facilitates well-coordinated, planned and organised care and support.
6. The needs and rights of carers are recognised and acted upon. Carers are offered support both while caring, and during bereavement. Employers recognise the ways in which workers are affected while caring for someone who is dying, and provide appropriate guidance and support.
7. Employers provide appropriate learning and development opportunities for workers to ensure that they are properly equipped to work with people at the end of life. Workers are encouraged to take responsibility for their own learning.

Click here to access the full document, with further guidance about applying the principles in practice.

The NICE End of Life for adult's quality standard

The NICE 'End of Life for adult's quality standard' is a framework for practice that must be followed by all practitioners working for the NHS that are involved in the provision, management or review of end of life care or treatment.

Understanding the framework will ensure that you:

  1. Understand the requirements of NHS practitioners;
  2. Support and work effectively with NHS practitioners applying the standard; and
  3. Recognise any need to challenge the practice of NHS practitioners.

The 16 quality statements within the standard are all evidence based and relevant to social care, although there is no formal requirement for practitioners working in local authorities to follow them.

Statement Description
1. People approaching the end of life are identified in a timely way.
2. 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.
3. 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.
4. 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.
5. 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.
6. People approaching the end of life are offered spiritual and religious support appropriate to their needs and preferences.
7. 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.
8. 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.
9. 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.
10. People approaching the end of life that 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.
11. NICE's quality standard on the care of dying adults in the last days of life.
12. The body of a person who has died is cared for in a culturally sensitive and dignified manner.
13. Families and carers of people who have died receive timely verification and certification of the death.
14. 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.
15. 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.
16. 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.

Click here to access the quality standards document for further information about applying each standard in practice.

8. Statutory Assessment, Planning and Review

Using this section of the procedure

This section of the procedure should be used when:

  1. A person is approaching end of life; and either
  2. The Local Authority is responsible for meeting eligible needs; or
  3. The Local Authority and the ICB are meeting needs jointly; and
  4. You are responsible for carrying out statutory functions of the Care Act.

Statutory duties under the Care Act

If the Local Authority is meeting any of the person's eligible needs under the Care Act (including joint funding) all of the statutory functions of the Act apply. This includes the requirement to:

  1. Promote individual Wellbeing;
  2. Provide information and advice;
  3. Prevent, reduce or delay needs;
  4. Safeguarding;
  5. Assess/reassess eligible needs;
  6. Provide a Personal Budget;
  7. Carry out Care and Support Planning; and
  8. Carry out statutory reviews of a Care and Support Plan.

The importance of joint work

People approaching the end of life experience a range of symptoms and feelings and it is important to understand all of them, so that an appropriate and consistent response can be provided across all organisations with responsibility for care or treatment.

This includes:

  1. Physical symptoms (such as pain, breathlessness, nausea and fatigue);
  2. Anxiety or other mental health issues (such as Depression);
  3. Social difficulties (for example an inability to take part in their community);
  4. Spiritual difficulties (for example a loss of identity).

The purpose of adult Care and Support end of life interventions

The purpose of any end of life intervention is quite simply to help people to live as well as possible and to die with dignity.

The following are the key objectives of end of life care:

  1. To enhance quality of life for people with long-term conditions;
  2. To ensure that people have a positive experience of care;
  3. To ensure people are treated and cared for in a safe environment and that they are protected from avoidable harm.

Any adult Care and Support intervention provided during end of life should therefore, wherever possible:

  1. Delay and reduce the need for care and support;
  2. Enhance the quality of life for people with care and support needs;
  3. Align any care and support that people receive at end of life to their needs and preferences;
  4. Ensure that people have a positive experience of adult care and support;
  5. Proactively safeguard adults whose circumstances make then vulnerable;
  6. Increase the length of time a person spends in their preferred place of care;
  7. Reduce unscheduled hospital admissions; and
  8. Ensure any hospital admissions are managed well.

Specific considerations

The table below sets out some of the specific things that you should take into account or consider as a matter of course whenever you are carrying out any statutory function to support a person who is approaching end of life.

What Why
Increased monitoring or professional support People approaching end of life (and their families) can become anxious or concerned very quickly, and may not always feel able to contact you for support. Maintaining regular contact with them is good practice and can help to avert a crisis.
More frequent reviews As end of life approaches the outcomes, wishes and preferences of a person can change regularly. So too can informal support networks. It is important to review often, so that any small amendments can quickly be made to the Care and Support Plan, the person's independence and control is maximised and any need to reassess the person's needs, or any carer's needs can be identified.
Contingency planning Circumstances can quickly change as a person approaches end of life and it is prudent to anticipate what some of these changes may be, and agree a contingency plan in advance. This will reduce the likelihood of delays in meeting needs caused by a need to seek urgent additional funding.
Joint reviews/reassessments Health and social care professionals involved in the person's care and treatment must to work together in order to understand all of a person's needs so that a coordinated, consistent and responsive approach can be provided.
Regular re-assessment of needs As end of life approaches a person's needs are likely to change and changes may not always be those that are anticipated. Changes can be functional changes, but can also be related to physiological of spiritual needs, as the person's condition progresses. Regular re-assessment ensures that all eligible needs continue to be met, and opportunities to promote independence are optimised.
The timing of assessment or review Reviews and reassessments should be responsive and swift to any changes that occur in needs or outcomes. This will ensure the person's independence and control and optimise any opportunities for independence that exist.
Referring to specialist practitioners As the person's needs change there may be a need for a specialist practitioner to work with the person, or join the end of life team to ensure a holistic approach is maintained and needs are well met. Examples could include a Speech and Language Therapist (if the person's communication needs change) or a Psychologist (to support them to manage any phobias, confidence or anxiety issues).
Explicit questions about what's working and not working People approaching end of life may be reluctant, or lack confidence to raise a concern about their current services or to admit that something is not working as well as hoped. If these issues are not identified there could be a significant impact on Wellbeing and the person's ability to 'live well'.
Whether the person still wants the same big things in life As end of life approaches a person can change their mind about the big things, such as where they want to live (and die). For example a person may have wanted to remain at home but, as their needs have a greater impact on a carer may change their mind over time. It is important that the person's current wishes are sought regularly, so that care or treatment remains aligned with this wherever possible.
Identifying a need for spiritual Approaching end of life can present spiritual questions for the person and their family, around concepts such as identity, role and the meaning of life. These can be very disruptive and have a major impact on emotional Wellbeing if appropriate support is not provided.
Advance care planning Advance care planning can help a person to think specifically about the care and treatment options as their condition progresses, and to decide and communicate their preferences in advance. This is especially useful to consider if they are likely to lose capacity to make such decisions, or if they may not be able to communicate wishes in the future. It helps to ensure that the person's wishes and preferences inform all decisions, even if the person can no longer be involved in them.
Referring to specialist support services As end of life approaches people may become anxious about their finances or wills, or they may wish to make a Lasting Power of Attorney or Advance Statement to Refuse Treatment. Families may start to experience feelings of loss and grief before the person dies. Specialist services should be made available at the time that they are needed, and would be most beneficial.
What information and advice would be helpful and when to provide it Good information and advice, provided at the right time can really support a person (and their family) to understand options, talk things through and make plans and decisions. However, too much information, irrelevant information or poorly timed advice can lead to increased anxiety and reduced ability to use the information and advice effectively.
Adjusting communication style A person's communication needs can change as their condition changes-what was accessible before may not be now.
Assessing or re-assessing carers needs Carers may find it harder than anticipated as the person's needs increase. Often the carer's own anticipated networks of support may step back as they themselves find the situation difficult, and this can increase the risk of carer breakdown.
The presence of any risks that can be avoided As needs change it is likely that risks will also change, and whenever these are avoidable swift steps should be taken to manage them. For example, if the person is at risk of falls from reduced mobility an Occupational Therapy referral should be made, and appropriate equipment provided as soon as possible.
Providing support to family members, including children

As end of life approaches family members may be affected in ways they had not anticipated, and there may be a need to provide additional information, advice or support.

Particular consideration should be given to the needs of children, and whether it is appropriate to request support from a specialist children's service or practitioner.
Making a referral to NHS Continuing Healthcare As end of life approaches a person's eligibility for NHS Continuing Healthcare is likely to increase. Ensuring they have access to this funding could ease financial burdens and will ensure the most appropriate profession has care management responsibility.
Any need for specialist palliative care The sooner a need for specialist palliative care is identified the sooner it can be provided. A period of specialist palliative care is often the best way to treat complex or unstable needs and support the person to return to their preferred place of residence.

Signing off a Care and Support Plan

Draft Care and Support Plans should be prepared and submitted for sign off in a timely way.

There should be no unnecessary delays in signing off the plan, and there should be mechanisms in place to agree small changes to the plan as and when they are needed, so that any opportunities that exist to maintain independence or to support a person to return home are maximised.

9. Arranging Services

Arranging specialist palliative care

Specialist palliative care is provided by a dedicated team of professionals with specific skills and knowledge in the area. It encompasses hospice care, and rapid response palliative care. It is normally needed when the person's symptoms became more complex and can no longer be managed in a timely way through general palliative care. The deterioration in needs can be sudden, or can take place over time.

Specialist palliative care must be arranged by the person's GP or Clinician.

Arranging Care and Support services

The Commissioning and Brokerage procedure contains guidance about arranging all adult Care and Support services. Click here to access it.

If the person is admitted to hospital

If a person is admitted to hospital you should act swiftly and work effectively with the ICB to ensure that:

  1. Any information you have about the person's current wishes and preferences around care or treatment are shared; and
  2. Local Authority processes and decision making do not lead to unnecessary delays in discharge; and
  3. Opportunities to maintain independence or to support a person to return home are maximised.

10. Advanced Care Planning

10.1 What is Advance care planning?

Advance care planning (ACP) is a voluntary process of discussion about future care that normally takes place in the context of an anticipated deterioration in the person's condition, which could include:

  1. A likely loss of capacity to make their own decisions; and
  2. A likely inability to communicate their wishes to others.

Advanced care planning can be extremely beneficial in understanding:

  1. The person's concerns;
  2. The person's personal goals and outcomes; and
  3. The person's preferences about the types of care or treatment they may want to receive in the future.

Advance care planning can also support the person to make a decision about:

  1. Making a Lasting Power of Attorney;
  2. Making an Advance Decision to Refuse Treatment; and
  3. Writing an Advance Statement.

10.2 Carrying out advance care planning

If you are going to carry out advance care planning you should consider doing so alongside any existing planning or review process (for example a Care and Support Plan review).

Who should be involved

If the person agrees (or if it is in their Best Interests if they lack capacity) and advance care planning discussion should:

  1. Involve the person's family or friends;
  2. Be documented;
  3. Be regularly reviewed; and
  4. Be communicated to key people involved in care or treatment.

It is important that a health professional is involved in advanced care planning to:

  1. Comment on prognosis; and
  2. Provide information about available treatment options.

You should signpost a person to an appropriate legal service if they:

  1. Wish to make a Lasting Power of Attorney; or
  2. Wish to make an Advance Decision to Refuse Treatment; and
  3. They (or their representative) are not able to make the necessary arrangements, or access appropriate legal support themselves.

10.3 Universal Principles for Advance Care Planning

All advance care planning should have regard to the six universal principles:

  1. The person is central to developing and agreeing their advance care plan including deciding who else should be involved in the process;
  2. The person has personalised conversations about their future care focused on what matters to them and their needs;
  3. The person agrees the outcomes of their advance care planning conversation through a shared decision-making process in partnership with relevant professionals;
  4. The person has a shareable advance care plan which records what matters to them, and their preferences and decisions about future care and treatment;
  5. The person has the opportunity, and is encouraged, to review and revise their advance care plan;
  6. Anyone involved in advance care planning is able to speak up if they feel that these universal principles are not being followed.

For further information and guidance, see: Universal Principles for Advance Care Planning.

10.4 Specialist Guidance

If the person has a diagnosis of Dementia more specialist practice guidance for advance care planning is available. See: My Future Wishes: Advance Care Planning for people with dementia in all care settings.

11. Carers and Families

The duty to assess carers needs

Adult carers

Where it appears that an adult carer may have needs for Support (either now or in the future), you have a statutory requirement to assess:

  1. Whether the adult carer does have needs for Support (or is likely to do so in the future), and
  2. If so, what those needs are (or are likely to be in the future); unless
  3. The adult carer declines to have their needs assessed.

Young carers

There is a duty to meet the needs of young carers under the Children and Families Act in the same way as there is a duty to meet the needs of adult carers under the Care Act.

Where it appears that a child or young person under the age of 18 is providing care you must take steps to ensure they are appropriately supported.

The first thing you should do is liaise with children's services to establish whether the child or young person is already being supported as a young carer.

If support is in place you should provide children's services with any new information you may have about the impact of the adult's needs upon the child, but you will not need to provide any further support to the child.

If the young carer is not already being supported by children's services you should discuss and agree with your line manager and children's services who is best placed to assess them, and then proceed to make the necessary arrangements.

Supporting carers, family members and friends

As a practitioner working with end of life an important part of your role is to support carers, other family members (including children) and friends of the person who is approaching end of life.

This support could be:

  1. The provision of information, advice or signposting;
  2. Listening and talking through concerns and anxieties;
  3. Supporting them to access appropriate support or bereavement counselling.

When working with children you should be mindful of the potential need to adapt your communication, or to seek the involvement of a specialist practitioner.

When the person dies you should consider any need to provide time limited support to their carer, family or friends to ensure that they have been able to access the help that they need.

12. Learning Disability

If the person at End of Life has a learning disability, you can find additional resources and guidance at the Palliative Care for People with Learning Disabilities (PCPLD) website.

This includes the following:

  1. Palliative care and learning disability;
  2. Pain and distress;
  3. End of Life care planning/Advance Care Planning/funeral planning;
  4. Breaking bad news/talking about death and dying;
  5. Loss, grief and mourning.

13. When the Person Dies

Click here to access the Death of a Person procedure, which sets out the steps required when a person has died.