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2.12 End of Life Care

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 needs to 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 be less clear.

Personalised assessment and care planning underpin all care including care of the terminally ill person to ensure that peoples individual needs and wishes are understood and followed (see Assessment and Care and Support Planning). Dignity and choice are also central to the person’s care, as 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 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)

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. These include:

  • people with conditions other than cancer;
  • older people;
  • people with dementia;
  • people from Black and minority ethnic (BME);
  • 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.

In many cases a lack of understanding of people’s needs is still preventing people from receiving good end of life care. The needs of people from some groups, including people with a mental health condition, people with a learning disability, people who are homeless, and Gypsies and Travellers, are not always considered by services and commissioners.

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 10, 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 4, Consent). A presumption about a lack of capacity should never be made (see also Mental CapacityIndependent Advocacy and Independent Mental Capacity Advocate Service).

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 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 Making Advance Decisions

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 (see Making Advance Decisions chapter), 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 and Another for further information.

4. 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.

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.

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 and Independent Mental Capacity Advocates.

5.1 Best Interests Test

See also Best Interests

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 interest 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.

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)). 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 Assessments).

7. End of Life Advanced Care Plan

Following an assessment and information being shared between participating agencies, an end of life advanced care plan should be agreed between the adult, their relatives and the staff involved. This is a document that is held by the individual. However key details are recorded onto SystmOne by professionals. 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 Mental Capacity), 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 advanced 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 (More Care, Less Pathway, Independent Review of the Liverpool Care Pathway, 2013).

The care plan should be reviewed on a four weekly basis with everyone involved, to monitor changes to the adult’s health or circumstances. Once the adult has entered the dying phase – estimated to be up to 14 days before death (see Diagram 1: Timeframes in the dying process, More Care, Less Plan: p14) – 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 services 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

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 / care 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 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

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.

Appendix 1: An NHS Trust and others v Y and Another

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:

  • clinically assisted nutrition and hydration; and
  • a prolonged disorder of consciousness, that is a vegetative state;

and whether his life sustaining treatment:

  • could be withdrawn; and
  • under what circumstances could this occur; and
  • 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.

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