4.1.10 End of Life Care

1. Introduction

Some adults with care and support needs will have life limiting conditions or terminal illnesses, and some will inevitably die whilst receiving care and support 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 expectations of their remaining time. This means staff need to be responsive to changes in the adult’s health and their care and support needs, as well as those of the adult’s carers.

It is important to begin having conversations with people about their wishes and preferences for care in the last phase of life at an early stage, even if their prognosis at that time may not be clear.

Personalised assessment and care and support planning underpins all care, including care of the terminally ill, to ensure that individual needs and wishes are understood and followed (see Assessment and Care and Support Planning chapters). Dignity and choice are also central to the way care and support are provided because what is important to each individual in the last phase of their life will be different. Having conversations with adults (and their families) about their wishes and choices are vital in providing good, personalised end of life care.

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

2. Addressing Inequalities in End of Life Care

Most people receive good quality care at the end of their life, and are supported in a way which is caring and compassionate. However, people from certain groups may experience end of life care that does not fully consider their specific needs.

It is important, therefore, to consider the barriers that may prevent people from certain groups receiving good, personalised care at the end of their life. This will help to ensure that everyone has the same access to high quality, personalised care, regardless of their diagnosis, age, ethnic background, sexual orientation, gender identity, disability or social circumstances (for example if they are homeless or in prison).

Assessments and care and support planning for people receiving end of life care should consider if the adult has any specific needs as a result of:

• conditions other than cancer;
• being an older person;
• living with dementia;
• being black or from a minority ethnic group;
• being lesbian, gay, bisexual or transgender people;
• having a learning disability;
• having a mental health condition;
• being homeless;
• being in secure or detained setting;
• coming from Gypsy and Traveller communities.

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

For more information see:

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)

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 (Care Quality Commission)

3. Approaching the End of Life

Discussing death with adults and their relatives is often difficult. Such conversations require 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 – either the GP or hospital doctor – to initially inform the adult and / or their relatives of their diagnosis and prognosis. Doctors can 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, if they have one – 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.

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 should ensure that all 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 mental capacity assessment should be completed and an independent mental capacity advocate involved in their care (see Section 5, Consent). A presumption about a lack of capacity should never be made (see Independent Mental Capacity Advocate 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 preferences for 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

Everyone has the right to refuse cardiopulmonary resuscitation (CPR) if they do not want to be resuscitated if they stop breathing or their heart stops beating. Where the decision has been made in advance it will be recorded on a specific form special and placed in the patient’s records. It is known as a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision, or a DNACPR order. A DNACPR order is not permanent; it can be changed at any time. See Section 4, Do not resuscitate, in the Advance Care Planning chapter for more information.

3.2 Adults in a vegetative state

Following a Supreme Court ruling (NHS Trust and others (Respondents) v Y (by his litigation friend, the Official Solicitor) and another) if an adult is in a vegetative state, their family do not have to consult a judge when deciding to stop their end of life care if the medical team are also in agreement. Even if the adult has not made an advance decision to refuse treatment (see Advance Care Planning chapter), if the family and medical team agree it is in the adult’s best interests, artificial feeding and hydration can be stopped.

4. Priorities for the Dying Adult and their Family

The priorities for the dying adult and their family should be identified and recorded. When providing end of life care, staff should ensure that:

• the possibility that the adult may die within the coming days and hours is recognised and communicated clearly, and that decisions about their care are made in accordance with their needs and wishes. These should be reviewed regularly, and revised as required;
• sensitive communication takes place between staff and the adult who is dying and those important to them;
• the dying adult, and those identified as important to them, are involved in decisions about treatment and care;
• the people important to the dying adult are listened to and their needs are respected;
• 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 mental capacity to make their own decisions solely because they are at the end of their life or dying. The same criteria apply to assessing mental capacity at this time as at any other point in their life. If there is concern that the adult lacks capacity, a mental capacity assessment should be conducted. If the outcome is that they do lack mental capacity, an independent mental capacity advocate should be appointed. See also Mental Capacity and Best Interests and Independent Mental Capacity Advocate chapters.

5.1 Best interests test

See also Mental Capacity and Best Interests chapter

At the end of life, many decisions are made on a best interests basis in regard to palliative care and withdrawing treatment.

If the adult has not made an advance decision or does not have a health and welfare of a lasting power of attorney (LPA) in place, the decision on which treatment should /or should not be provided rests with health professionals, not the adult’s relatives.

The health professional must determine what is in their patient’s best interests, taking all the relevant circumstances into account; both medical and non-medical.

6. Assessment, Care Planning and Review

Agencies who are involved with the adult should carry out assessments to identify the adult’s needs and any gaps in current care and support that need to be addressed. The assessment process should involve the adult and relevant family members. Joint assessments should be undertaken wherever possible, to reduce pressure on the adult and their family, and support multi-agency working and information sharing. A carer’s assessment may also be required (see Section 8.1 Support for carers).

7. End of Life Care Plan

Following the assessment, 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 their 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 Mental Capacity and Best Interests 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 3, 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 – which 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 are shared with relatives and staff including, where possible – those who are not directly involved in the review of the care plan.

8. Care Coordination

See also NICE End of Life Care for Adults – Quality 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.

8.1 Support for carers

The needs of carers often change as the cared-for adult’s condition progresses and they near the end of life. When the care and support needs of the adult increase it can be a very intense time, which results in more physical and emotional demands being placed on the carer. Carers put the needs of their loved one first during this final period, but this can put an additional strain on their physical and emotional wellbeing. So good support for the carer is vital.

If they have not previously had a carer’s assessment, one should be arranged so they can receive the practical, emotional and financial support they need.

National carer organisations can also help provide specialist support and advice, including:

• The End of Life Carers Project run by Carers Network;
• Hospice UK’s information and support resources and advice from its Dying Matters campaign;
• Healthtalk.org’s section on caring for someone with a terminal illness

9. Care in the Last days of Life

During the last days of life, the support provided should help to ensure the adult is 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

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.

11.1 Reflective practice and supervision

See Supervision chapter

The death of an adult can be a difficult time for staff, especially if they have had a longstanding and meaningful relationship with the adult and their family. This can be made more difficult where staff cannot share details about their work with their own family and friends.

If required, support should be provided or made available by the service manager and other professional services.

Support is also available online from: Bereavement Resources for the Social Care Workforce (Department of Health and Social Care)