1. Introduction

It is an unfortunate fact that service users will have life limiting conditions or terminal illnesses either on admission to a hospital or residential service or whilst living at home. As a result of either diagnosis, some service users will die whilst in the care of services. This chapter provides guidance and procedural information for staff to ensure service users receive the best possible care to enable them to die a peaceful and dignified death, and that their relatives feel consulted and supported during a difficult time.

2. The End of Life

People who have a life-limiting or terminal illness may differ in the time in which they become seriously ill. Some may become ill very quickly; alternatively other people may exceed predictions of their life remaining, as estimated by medical staff. This requires all staff to adapt to the service user’s changing circumstances and needs, and those of their relatives, according to the progression of their illness. The term End of Life, therefore, encompasses a period from 12 months up until the point of death. The Independent Review of the Liverpool Care Pathway (2013) provides more information about timeframes in the dying process.

The End of Life Care Plan – which is drawn up in conjunction with the service user (wherever possible), identified key relatives, partner agency staff, the keyworker and their manager where appropriate –  should be regularly reviewed with all parties to take into account the progression of their illness, their needs and expressed wishes, and the views of their relatives. See Section 5, Assessment, Care Planning, and Review.

3. Discussions as the End of Life Approaches

By the very nature of the matter, discussing death with service users and their relatives is often a very difficult conversation, which requires great sensitivity and understanding of the situation. This applies even when people have been diagnosed with terminal conditions and are aware of their prognosis. This is the responsibility of medical staff, whether the service user’s GP or hospital doctor, to initially inform service users or relatives of their diagnosis and prognosis. Whilst medical staff may often provide an estimate as to how long a person may continue to live, often at the request of the service user and family, it should be stressed that no one can accurately predict when a person will die. But it is the role of other involved staff, particularly the service user’s key worker, to support them and their relatives once this fact has been communicated to them. It is vital to ensure there is no avoidance of discussing the needs and desires of both the service user and their close relatives, however difficult it may be. Communication should be open and honest, and take place in a private room or their own home. Keyworkers or named nurses should be sufficiently experienced before being required to conduct such discussions with service users and relatives (see Section 9, Training and Supporting Staff). The response of the service user and their relatives should be communicated to other staff at meetings (and handover periods if an inpatient), to ensure they are also informed about how best to provide appropriate and individual care and support in such circumstances.

There may be an added complexity for service users who have learning difficulties or neurological impairments which may impact on their ability to understand what is happening to them, and what doctors and other partners are trying to communicate to them. There should be no presumption about a lack of Capacity however; a Best Interests assessment should always be completed and an Independent Advocate involved in their care (see Section 4, Consent).

All discussions with service users and their relatives should be documented in case records, particularly when any specific wishes or concerns are expressed, including cultural or religious needs. The key worker / named nurse should always take action in relation to such, and decisions or feedback communicated to them as soon as possible in order to reduce anxiety or distress which will inevitably accompany a person’s end of life. Discussions should include administration of fluids and nutrition, and also medication – including pain relief, particularly when administered by syringe drivers. These are often areas of care that have been noted to cause relatives distress, particularly where communication with doctors and other staff has been poor (Independent Review of the Liverpool Care Pathway, 2013).

4. Addressing Inequalities in End of Life Care

A Different Ending: Addressing Inequalities in End of Life Care Overview Report (Care Quality Commission)

A Different Ending: Addressing inequalities in end of life care Good Practice Case Studies (Care Quality Commission)

Most people receive care at the end of their life that is of good quality, and is caring and compassionate. There are, however, some people from certain groups who may experience care that is not as good. This can be because commissioners, providers and staff do not always understand or fully consider their specific needs.

Staff need to understand some of the barriers that may prevent people receiving good, personallised care at the end of their life. It is important to ensure that everyone has the same access to high quality, personalised care at the end of their lives, regardless of their diagnosis, age, ethnic background, sexual orientation, gender identity, disability or social circumstances.

5. Priorities for the Dying Person

The Leadership Alliance for the Care of Dying People has published guidance to caring for people in the last few days and hours of life: Priorities of Care for the Dying Person: Duties and Responsibilities for Health and Care Staff – with prompts for practice. See also Themed Review of End of Life Care, Care Quality Commission, 2015.

The guidance is for all professionals, from frontline health and care staff to commissioners and regulators. It focuses on the needs and wishes of the dying person, and those closest to them, in both the planning and delivery of care whether this be at home, in hospital or in a residential setting.

The approach is based on five ‘Priorities for Care’ that are essential for each point of care for an adult who is in the last days and hours of their life. The five priorities are:

  1. the possibility that a person may die within the coming days and hours is recognised and communicated clearly, decisions about care are made in accordance with the person’s needs and wishes, and these are reviewed and revised regularly;
  2. sensitive communication takes place between staff and the person who is dying and those important to them;
  3. the dying person, and those identified as important to them, are involved in decisions about treatment and care;
  4. the people important to the dying person are listened to and their needs are respected;
  5. care is tailored to the individual and delivered with compassion – with an individual care plan in place (Cited in Leadership Alliance for the Care of Dying People).

The aim is to promote a culture of compassion in the NHS and social care, which puts people and their families at the centre of decisions about their treatment and care.

4. Consent

It should not be assumed that a service user lacks Capacity because they are in the End of Life or Dying phase. The same criteria apply to assessing capacity in this phase as at any other point of their life. If there is concern that they lack capacity, a Best Interests assessment should be conducted and if the outcome is that they do lack capacity, an Independent Advocate should be appointed. See also Mental Capacity Act 2005: Policy and Practice Guidelines (Including Mental Capacity Assessments) and Deprivation of Liberty Safeguards Procedure.

5. Assessment, Care Planning and Review

Specialist assessments will be undertaken by agencies involved with the service user, in relation to the needs that services can meet and in order to identify any gaps in care that need to be addressed. The assessment process should involve the service user wherever possible, and relevant family members. This may also include a carer’s assessment.

An End of Life Care Plan should be drawn up in conjunction with the service user and relatives, and other agencies incorporating relevant information from professional assessments. This will include planning for a deterioration in the service user’s health, their expected health needs based on professional knowledge of the service user’s individual condition, and any express wishes either the service user or relatives have in relation to such eventuality.

The End of Life Care Plan should also detail any specific cultural or religious needs of the service user and their relatives, both during the End of Life and Dying phases, and after death. This is particularly important in order to communicate such needs to staff caring for the service user, who have not been involved in their assessment, care planning or review.

Following discussions with the service user and their relatives, the End of Life Care Plan should also include action to be taken in relation to administration of fluids and nutrition, and pain relief as appropriate (see Section 3, Discussions as the End of Life Approaches). Refusal to take food and drink should be the decision of the service user, not staff (Independent Review of the Liverpool Care Pathway, 2013).

The End of Life Care Plan should be reviewed on a four weekly basis during the End of Life phase (see Table 1, Timeframes in the Dying Process) , but as soon as changes are noted in the service user’s health or circumstances, the Care Plan should be reviewed with all parties concerned. Once the service user has entered the Dying phase (see Table 1), the Care Plan should be reviewed on a weekly or daily basis as appropriate. Changes to the Care Plan should be communicated to all involved staff and relatives as appropriate, who were not directly involved in the development and review of the Care Plan.

6. Co-ordination of Care

See also NICE End of Life Care Standards

In order for the service user to be able to die in dignity and peace, all services identified as required during assessment should be provided. Provision of such services, and the quality of the service provided, should be coordinated by the key worker.

The service user and relatives should be aware who the key worker and co-key worker / named nurse are, either in the service or at home. If they are at home, they should have all the necessary contact details of involved staff.

Feedback on services provided should be gathered from the service user and their family, and fed in to the care plan review process as required.

7. Care in the Last days of Life

All involved staff are responsible for providing the best possible care for the service user and their relatives in the final days of their life, as detailed in the End of Life Care Plan and depending on their job role. This should be coordinated by the key worker / named nurse, in conjunction with other involved agencies, particularly the service user’s GP and visiting nurses.

Staff visiting the service user and their relatives should ensure all their needs are being met, and they are satisfied with the care and support they are getting. This is in addition to the input of the key worker / co-worker at this time.

Consideration should also be given to supporting of other service users, who will be aware of the serious illness and subsequent death of a fellow resident, who may also have been a friend.

8. Care after Death

Where a service user dies in a hospital or residential setting, the procedures of the service in relation to responding to death should be followed. When the person dies at home, the key worker / named nurse or other first professional at the scene should follow their own agency’s procedures for dealing with the death of a service user.

In both sets of circumstances, these will include obtaining medical confirmation of the death and issue of a death certificate, responding to the needs of relatives and providing them with necessary information – including registering the death, funeral arrangements, and bereavement services – and informing staff from other agencies who have been involved in the service user’s care. When a person dies in a hospital or residential setting procedures should also include arrangements for personal property of the deceased and arrangements for removal of the body (this will depend on the circumstances of the person’s death).

9. Training and Supporting Staff

End of Life Care training should be available for all staff, but particularly for key workers / named nurses and managers. This will equip them to respond confidently to the complex issues that often arise for both service users and their relatives. This, in turn, should ensure the best possible levels of care and support and enable the service user to die peacefully and with dignity, and their relatives feel supported. Training for staff should address the process of loss: shock; denial; anger; depression; acceptance.

The death of a service user can be a difficult time for staff, especially if service users and their relatives have been known to staff for some time and with whom they have formed close working relationships. Support should be provided or made available by the service manager, as required.