Care of dying adults in the last days of life

Context

Without an evidence‑based approach to the care of dying people, there is a danger of placing tradition and familiar policies before the needs of individuals and families. The Liverpool Care Pathway (LCP) for the Care of the Dying Adult and its numerous local derivatives were widely adopted in the NHS and UK hospices until 2014. Although the LCP was designed to bring values of 'good' end of life care from the hospice movement to mainstream hospitals and elsewhere, it met with increasing criticism from the public, healthcare professions and the media. There were 3 main areas of concern:

These were not necessarily a direct consequence of following the LCP, but often happened because of poor or indiscriminate implementation and a lack of staff training and supervision.

This guideline responds to a need for an evidence‑based guideline for the clinical care of the dying adult throughout the NHS. It is focused on care needed when a person is judged by the multiprofessional clinical team to be within a few (2 to 3) days of death. This is different from other important NHS initiatives labelled 'end of life care' which are aimed at improving care for people in the last year or so of a chronic condition.

The guideline is intended for all healthcare professionals and other care providers who might be involved in the care of a person who is nearing death in any NHS setting. It is specifically aimed at non‑specialists working in primary care or in care homes, and healthcare professionals working in a wide range of clinical specialties who do not have specialist level training in end of life care. It will also provide a baseline for standards of care in settings that specialise in caring for people who are dying, such as non‑NHS palliative care units and hospices.

The ways in which people die and how long this takes varies widely, mostly because of the underlying diseases responsible but also the person's robustness or frailty, and their social setting. Some people remain mobile and largely self‑caring, and can continue to take oral medication and eat and drink up until their death. Others may die suddenly and unexpectedly after a significant trauma or catastrophic medical event. Some people may never experience any of the symptoms addressed in the guideline. People with progressive cardiac, pulmonary or neurological disorders, dementia, some forms of cancer or who have had a stroke may spend several weeks or months in a gradual or intermittent decline. Although the guideline focuses on the people who are thought to be in the last few days of life, for many people, especially those in a gradual decline, the principles of communication, shared decision‑making and pharmacological care can be applied far earlier in their care. The recommendations apply to all people at the end of life, whether they are conscious or unconscious.

For some people who are entering the last days of life, mental capacity to understand and engage in shared decision‑making may be limited. This could be temporary or fluctuating, for example it may be caused by delirium associated with an infection or a biochemical imbalance such as dehydration or organ failure, or it could be a permanent loss of capacity from dementia or other similar irreversible conditions. The guideline complements, but does not replace the healthcare professional and other's duty to comply with the Mental Capacity Act. It also makes clear the duties of the multiprofessional team regarding communication and involving those people important to the dying person.

This guideline provides recommendations to help healthcare professionals to recognise when a person is entering the last days of life or may have stabilised or be improving even temporarily; to communicate and share decisions respectfully with the dying person and people important to them; and to manage hydration and commonly experienced symptoms to maintain the person's comfort and dignity without causing unacceptable side effects.