1. Introduction

Many adults with care and support needs will have life limiting conditions or terminal illnesses. As a result, some adults will inevitably die whilst in the care of services, either in their own home or in a residential or hospital setting.

The prognosis for adults with life limiting or terminal illnesses vary in the timeframes in which they become seriously ill; even those with the same type of illness differ in how they experience symptoms. Some people become ill quickly; others exceed medical predictions of their remaining time. This means all staff need to be responsive to the adult’s changing level of health and consequent care and support needs, as well as those of their carers.

But there should be a shift in focus away from only identifying people who are clearly in the last year of life, and towards having conversations with people about their wishes and preferences for care in the last phase of life at an earlier stage, although their prognosis at that time may not be clear.

Personalised assessment and care planning underpins all care which includes care of the terminally ill, to ensure that people’s individual needs and wishes are understood and followed (see Assessment and Support Planning chapters). Dignity and choice are also central to the person’s care, because what is important to each individual in the last phase of their life will be different. Identifying people who may be in the last phase of life and having conversations about their wishes and choices are vital in supporting good, personalised end of life care.

This chapter provides information for staff to ensure adults receive the best possible care to enable them to die peacefully and with dignity, and the needs of their carers, other family members and friends are also met during such a difficult and often distressing time.

2. 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)

End of Life Care to Elderly and End of Life Care for Muslims in the UK (Muslim Council of Britain)

A Second Class Ending: Exploring the Barriers and Championing Outstanding End of Life Care for People who are Homeless

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, personalised 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. These include:

  • people with conditions other than cancer;
  • older people;
  • people with dementia;
  • people from Black and minority ethnic groups; lesbian, gay, bisexual and transgender people;
  • people with a learning disability;
  • people with a mental health condition;
  • people who are homeless;
  • people who are in secure or detained setting;
  • Gypsies and Travellers.

A lack of understanding of people’s needs can prevent people from receiving good end of life care.

Services which either offer a specific service to those at the end of their life or who work more generally with those who are terminally ill, should ensure that they meet the needs of people from all different groups.

3. Approaching the End of Life

Discussing death with adults and their relatives is often difficult. It is a conversation which requires great sensitivity, understanding and experience. This remains so even when an adult is already aware of their prognosis.

Managers should ensure that staff have good communication skills and the support they require to meet people’s individual communication needs. Talking about end of life care as part of wider care and treatment in the last phase of life is fundamental in planning and making choices about care.

It is the responsibility of medical staff – whether the adult’s GP or hospital doctor – to initially inform them and / or their relatives of the diagnosis and prognosis. Doctors often provide an estimate as to how long a person may live, usually at the request of the adult or their family, though it can be difficult to accurately predict when a person will die. Once they have been informed of the likely prognosis, it is the role of other staff – and particularly the adult’s key worker – to support them and their relatives with their care and support needs.

It is vital to allow time to support people in coming to terms with their situation and accept and acknowledge their feelings of loss, anger, fear and depression as normal in the circumstances. Adults need space and time to express their fears and feelings, make plans and say their goodbyes.

Families also need to be supported throughout this period in order to discuss and resolve their concerns, as this is likely to make the experience of being bereaved less painful and reduce the likelihood of suffering severe depression.

Communication with adults and carers should be open and honest, and take place in a private room or in their home environment. Keyworkers or named nurses should be sufficiently experienced before being expected to have such discussions with adults and their relatives (see Section 11, Training and Supporting Staff). Staff who are involved in the adult’s care should be informed of the nature of the conversation and the response of the adult and their relatives. This information should be shared at relevant meetings, including handover periods if the adult is an inpatient. This should ensure that staff involved are kept informed of the adult – and their family’s – feelings and wishes, and are all aware of how best to provide appropriate and individual care and support to the dying person.

Adults who have learning difficulties or neurological problems may have a limited understanding of their illness, prognosis and what doctors and other staff need to tell them. In such circumstances, a best interests assessment should be completed and an independent advocate involved in their care (see Section 5, Consent). A presumption about a lack of capacity should never be made (see Independent Advocacy chapter).

Discussions with adults and their family should be documented in the adult’s case record, particularly if specific wishes or concerns have been expressed. This includes cultural or religious requirements. The key worker / named nurse should always act on such expressions, and related decisions should be communicated to them as soon as possible. Such conversations should include the administration of fluids and nutrition, and medication – particular in relation to relieving pain. It is vital to involve family members in such discussions as these are often issues that cause relatives considerable concern. Clear and open discussions between the adult (where appropriate), relatives and staff – including medical staff – are key to ensuring effective communication and reducing potential distress.

3.1 Do not resuscitate

See also see Making Advance Decisions chapter

Please note: The Court of Appeal in Tracey v Cambridgeshire NHS Foundation Hospital Trust (2014) held that medical staff  have a legal duty to consult and involve patients in a decision to place a ‘Do Not Resuscitate’ (DNR) order on a patient’s medical notes. The Court held there should be a presumption in favour of patient involvement; there must be a ‘convincing reason’ not to involve the patient, and a failure to consult may breach the patient’s human rights. Causing potential distress to a patient was held not to be a good enough reason not to consult, although a patient’s human rights were unlikely to be breached if doctors decided not to consult because they believed this would cause physical or psychological harm. The Court also found the use of DNR notices in the absence of a clear and accessible policy would not comply with human rights legislation, as this would undermine the right of patients to be consulted. Policies should be directed at patients and copies automatically given to them and their families.

4. Priorities for the Dying Person

The priorities for the dying person should focus 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.

Whilst they will be individual to the person, the priorities may include:

  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.

5. Consent

It should not be assumed that an adult does not have capacity to make their own decisions because they are at the end of their life or dying. The same criteria apply to assessing capacity at this time as at any other point in their life. If there is concern that the adult lacks capacity, a Best Interests assessment should be conducted. If the outcome is that they do lack capacity, an Independent Advocate should be appointed (see also Mental Capacity and Independent Advocacy chapters).

6. Assessment, Care Planning and Review

Agencies who are involved with the adult will have to undertake specialist assessments in relation to the person’s care and support needs to identify the adult’s needs and any gaps in care that need to be addressed. The assessment process should involve the adult wherever possible, and relevant family members (see also Continuing Health Care – NHS chapter). Joint assessments should be undertaken wherever possible, to reduce pressure on the adult and their family. This will also support multi-agency working and information sharing. A carer’s assessment may also be required (see Assessment chapter).

7. End of Life Care Plan

Following an assessment and information which is shared between participating agencies, an end of life care plan should be agreed between the adult, their relatives and the staff involved. This should include the adult’s expected health needs based on professionals’ knowledge of their individual condition/s, any wishes either they or their relatives may have and planning the response for deterioration in the adult’s health.

As well as incorporating the adult’s wishes in relation to their care and support needs, including any religious or cultural requirements whilst they are alive and any forward planning needed concerning mental capacity (see Section 5.4 Forward Planning, Mental Capacity chapter), the care plan should also detail any specific needs of the adult or their family after death. This is particularly important in order to communicate these needs to other members of staff who may care for the adult of their family and who have not been involved in the assessment, care planning or review.

Following discussion with the adult and their relatives (see Section 2, Approaching the End of Life), the end of life care plan should also include reference to fluids, nutrition, pain relief and other medication. Refusal to eat, drink and take medication should be the decision of the adult, not staff.

The care plan should be reviewed on a four weekly basis with everyone involved, to monitor changes in the adult’s health or circumstances. Once the adult has entered the dying phase – this may be up to 14 days before death – the care plan should be reviewed weekly or daily as is assessed appropriate. It is essential that changes to the care plan as a result of the adult’s health or circumstances are shared with relatives and staff as appropriate – and agreed by the adult, where possible – who are not directly involved in the review of the care plan.

8. Care Coordination

See also NICE End of Life Care Standards

As soon as a decision has been made as to who the key worker and co-key worker / named nurse are, this should be communicated to the adult, their relatives and all professionals involved in providing care and support. This applies if the adult is at home, in hospital or in a residential setting. If the adult remains at home, they and their family should have all the necessary contact details of staff and services.

The keyworker should ensure that all services and interventions identified in the assessment are delivered to a quality standard, and follow up on any gaps in care, or unsatisfactory service provision.

Feedback on service provision from the adult and their family should inform the care plan review.

9. Care in the Last days of Life

The overall aim of this stage of a person’s life – for everyone involved – is they are able to die with dignity and as comfortably as possible.

Staff providing care and support to the adult should ensure all their needs are being met, and they are satisfied with the services they are receiving. This is in addition to the input of the key worker / co-worker at this time. This also applies to the care and support being provided to family members and any friends who visit.

In hospital or residential settings, thought should also be given to supporting other adults who will be aware of the serious illness and subsequent death of a fellow patient / resident, who may also have become a friend.

10. Care after Death

When an adult dies in a hospital or residential setting, the specific service procedures in relation to action to be taken upon death should be followed.

When the person dies at home, the key worker / named nurse or other first professional in attendance should follow their own service procedures for responding to the death of an adult in the community.

Whatever the setting, these will include obtaining medical confirmation of the death, issue of a death certificate, responding to the needs of relatives – which may include providing information about how to register the person’s death, how to make funeral arrangements and bereavement services – and informing staff from other agencies who have been involved in the adult’s care.

Families should receive support, including allowing and supporting them to be with the deceased person if they so wish.

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).

11. Training and Supporting Staff

See Supervision chapter

Training in relation to providing and coping with care provision at the end of life should be available for all staff, but particularly for key workers / named nurses and managers. This should enable them to deal more confidently with complex issues that often arise for adults, their relatives and also for other staff, particularly if they have less experience. This, in turn, should ensure the best possible levels of care and support and enable the adult to die peacefully and with dignity, and their relatives to feel supported. Training for staff should include:

  • understanding the process of loss, including shock; denial; anger; depression; acceptance;
  • communication;
  • multi-disciplinary working;
  • dealing with difficult situations and breaking bad news;
  • recording;
  • principles of counselling and family working;
  • supervision and reflective practice.

The death of a service user can be a difficult time for staff, especially if the adult 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 and other professional services, as required and necessary.