End of Life Procedures and Practice Guidance

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.

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 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).

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.

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.

Palliative care is a multidisciplinary approach, involving a small team of professionals' co-ordinating 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.

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 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 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.

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 guidance in the NHS Continuing Healthcare Procedure.

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 follow guidance in the NHS-funded Nursing Care Procedure.

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 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.

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:

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.

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.

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.

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.

See SCIE End of Life Hub.

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.

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.

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. Safeguard against the risk of harm or abuse;
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.

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).

See the Joint Work Procedure, which provides guidance about the general principles for good joint work.

The purpose of any end of life intervention, regardless of who is providing it, 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.

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.

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.

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.

The Commissioning and Sourcing Care Procedure contains guidance about arranging all adult Care and Support services.

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.

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.

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) any 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.

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.

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.

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.

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.