1. Introduction

It is an unfortunate fact that some of our 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, some service users will die whilst in the care of our 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 the expectations 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 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 7, 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 11, 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 6, 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.

3.1 Do not resuscitate

Everyone has the right to refuse 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.

3.2 Persons in a vegetative state

The Supreme Court ruled in July 2018 (An NHS Trust and others v Y) that where a person is in a vegetative state, their family will no longer 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 person has not made an advance decision to refuse treatment, where the family and medical team agree it is in the person’s best interests, artificial feeding and hydration can be stopped. See also Appendix 1: An NHS Trust and others (Respondents) v Y (by his litigation the Official Solicitor) and Another (Appellants) [2018] UKSC 46.

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)

A Second Class Ending: Exploring the Barriers and Championing outstanding End of Life Care for People who are Homeless (Care Quality Commission)

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

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.

5. Priorities for the Dying Person

The priorities for the dying person should focus on the needs and wishes of them 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, these priorities may include:

  • 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;
  • sensitive communication takes place between staff and the person who is dying and those important to them;
  • the dying person, and those identified as important to them, are involved in decisions about treatment and care;
  • the people important to the dying person 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.

6. 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 Assessing Mental Capacity Guidance and Deprivation of Liberty Safeguards Procedure.

6.1 Best Interests Test

See also Best Interests Decision Making chapter

The test should be applied in the event that a patient does not have capacity to make their own decision. It applies when the patient loses capacity in accordance with the MCA or through loss of consciousness (temporary or permanent).

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

In the absence of a valid advance decision or health and welfare of a lasting power of attorney (LPA), the decision on which treatment should /or should not be provided rests with the health care professionals, not the relatives.

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

7. 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.

The End of Life Care Plan should be reviewed on a four weekly basis during the End of Life phase, 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 (which may be up to 14 days before death), 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.

8. 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.

9. 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.

10. 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).

11. 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 to 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.

Appendix 1: An NHS Trust and others (Respondents) v Y

Case Law

See An NHS Trust and others (Respondents) v Y (by his litigation the Official Solicitor) and Another (Appellants) [2018] UKSC 46

This was an appeal against a decision that it was not necessary to obtain a court order before life sustaining treatment could be withdrawn.

The question before the court was whether an order must always be obtained before the patient with:

(i)            clinically assisted nutrition and hydration (CANH);and

(ii)           a prolonged disorder of consciousness (“PODC”) i.e. a vegetative state;

and whether his life sustaining treatment:

(a)          could be withdrawn; and

(b)          under what circumstances could this occur; and

(c)           could it be done without court involvement.

The NHS Trust sought a declaration in the High Court that it should not be compulsory to seek court approval for the withdrawal of life sustaining treatment from Mr Y. The clinical team and the patient’s family agreed it was not in his best interest to continue treatment and whether any civil or criminal liability would result if that treatment was withdrawn. The High Court granted a declaration that it was not compulsory, that is, mandatory to seek court approval for the withdrawal of life sustaining treatment in these circumstances.

Permission was granted for an appeal directly to the Supreme Court who dismissed the application. They ruled that it had not been established that the common law or the European Convention of Human Rights gave rise to a compulsory or mandatory requirement to involve the court to decide upon the best interest of every patient in a vegetative state (PDOC) before life sustaining treatment could be withdrawn. However if a situation arose where the decision was finely balanced or there was a difference of medical opinion or a lack of agreement from persons with an interest in the patient’s welfare, a court application should be made.

The practical implication of the judgment is the court are handing back the decision making to the clinicians and their family. There is a responsibility on practitioners that they ensure the Mental Capacity Act 2005 is understood and applied cautiously within a clinical context in these types of cases.