Care of a dying patient starts with the multiprofessional team recognizing and accepting that the terminal phase has begun. This has been cited as perhaps the single most important factor in enabling the achievement of all the elements associated with a ‘good death’ (Lacey [77]).

Early identification that a patient is dying is a key element in quality end‐of‐life care. A major challenge for all staff is knowing how and when to open up a discussion with individuals and their families about what they wish for as the patient nears the end of life. Nurses are ideally placed to identify the various clinical triggers. One tool that supports professionals in recognizing those patients who need supportive and palliative care is the Supportive and Palliative Care Indicators Tool (SPICT) (see www.spict.org.uk/the‐spict). The SPICT™ is a guide to identifying people with one or more advanced illnesses, deteriorating health and a risk of dying (Highet et al. [61]).

It is important that healthcare professionals recognize that sometimes the individual and their family and carers may struggle to consider the future. Therefore, conversations and care should be guided and planned sensitively (NEoLCP [101]). This planned approach can lead to improved outcomes in terms of both patient care and best use of NHS resources. Early discussion enables the patient to have more control over their care and should result in the more frequent use of advance care planning (discussed further below) (NEoLCP [101]).

The National Palliative and End of Life Care Partnership ([101]) has clarified the most important issues in facilitating and optimizing end‐of‐life care. These are:

Recognizing dying can be challenging for health and social care professionals. There is often uncertainty about how long a person has left to live, and the signs that suggest that someone is dying are complex and often subtle (NICE [107]). Nursing care during this period does not simply represent a continuation of previously given care, or, necessarily, the complete cessation of all ‘active treatment’ measures. Assessment of the individual patient and their family will help to determine the appropriate next steps, which can vary greatly from person to person. It is important that family members and carers of people approaching the end of life are involved in the provision of care and decision making, and it is vital to recognize that they have their own needs (DH [36], NEoLCP [101]).

Treating patients as individuals with differing needs is pivotal to the delivery of optimum palliative and end‐of‐life care. Included in this is enabling patients to be cared for and to die in a place of their choice, which is a central tenet of the delivery of good‐quality end‐of‐life care (DH [36], NEoLCP [101]). Nurses play a key role in assessing the patient's complex needs relating to preferred place of care and death. Discussions must be sensitive and taken at the patient's pace. Ahearn et al. ([2]) performed a retrospective study which revealed that the preferred place of death was not discussed with 92% of patients. It also revealed that if advance care planning had taken place, a number of the patients included in the study could have avoided a hospital admission and died in their normal place of residence. A number of barriers to achieving patients’ individualized preferences and wishes have been recognized, such as lack of recognition of patients entering the last year of life and therefore limited advance care planning as well as issues surrounding communication (DH [38], NHS England [104]).

National documentation, including the End of Life Care Strategy (DH [36]) and Ambitions for Palliative and End of Life Care (NEoLCP [101]), identified the need to improve co‐ordination of care, recognizing that people at the end of life frequently receive care from many different organizations. The subsequent national development of locality registers (now known as ‘electronic palliative care co‐ordination systems’) came about as a mechanism for enabling co‐ordination between health and social care professionals involved in a patient's care. One such system, Co‐ordinate My Care, has shown that in areas where these records are used, the successful achievement of preferred place of death has increased for those patients who have expressed a preference (Petrova et al. [118]). Consent to use these systems should be sought from patients who are being discharged for end‐of‐life care at home, in order to ensure that their wishes are effectively communicated and adhered to.

For individuals who wish to be discharged to their home or a care home, access to specialist palliative care and 24/7 advice and support is vital (NEoLCP [101]). Proactive working and a combination of services across many different settings and providers are crucial; prior to discharge, nurses should ensure that appropriate referrals are made to specialists within the team who will work in partnership with primary and community care services to facilitate the patient's safe discharge. The community nurses and/or hospice teams must be provided with all the necessary documentation and information relating to the patient's condition and discharge form or checklist (an example discharge checklist is shown in Figure 11.2). Anticipatory medications for pain, agitation, nausea and additional chest secretions should be planned, with the medications prescribed in advance.

For care home and home settings, it is essential that the GP is notified immediately of any patient who is being discharged for end‐of‐life care. This will enable them to make arrangements to review the patient as soon as possible; it is crucial that the GP reviews the person regularly and at least every 14 days, as this ensures that, when the patient dies, a Medical Certificate of Cause of Death (MCCD) can be appropriately issued without involving the coroner.

Advance care planning is ‘the process by which patients, together with their families and healthcare practitioners, consider their values and goals and articulate their preferences for future care’ (Tulsky [154], p.360). This planning allow adults (over the age of 18) to make a legal decision to refuse, in advance, a proposed treatment (or the continuation of a treatment) if at the relevant time the person lacks the capacity to consent to it. Comprehensive advance care planning can help to avoid inappropriate interventions and/or readmission to hospital. Guidance on decision making and mental capacity (NICE [110]) clearly highlights the importance of advance care planning at the beginning of a long‐term or life‐limiting condition to better support patients and co‐ordinate their care.

An Advance Decision to Refuse Treatment (ADRT) can only be made by those who are deemed to have the mental capacity to do so, and it allows only for the refusal of treatments – it cannot enforce the provision of specified treatments (DH [37]). The Mental Capacity Act ([93]) contains statutory guidance about ADRTs. If an ADRT complies with all the tests set out in the Mental Capacity Act, it is legally binding, so it must be respected as if the person who made the ADRT had capacity and refused the treatment at the time the treatment was required.

ADRTs must be made in writing, must be signed and witnessed, and must expressly state that the decision stands even if the person's life is at risk (DH [37]). They can be withdrawn verbally or in writing and are not considered valid if the person has conferred lasting power of attorney on another person. Equally, they can be invalidated if the person has done anything that is clearly inconsistent with the original ADRT, for example if there has been any change in their religious faith.

Organ donation is an important consideration at the end of life. From spring 2020, the law changed from an ‘opt‐in’ system (where individuals are required to register as potential donors) to an ‘opt‐out’ system. This means that everybody can be considered a potential donor unless they have added their details to the NHS Organ Donor Register to say that they do not wish to donate their organs, or unless they are in one of the excluded groups (NHS Blood and Transplant [102]). However, this new law recognizes that the dying person's wishes regarding organ, tissue and body donation should be taken into consideration, and consultation with the patient and/or their family should be sought. There are some restrictions on the organs that some people can donate, such as patients with cancer; however, this does not mean that they cannot donate anything. Some might be able to donate parts of the eyes (the cornea), and other tissue can be considered; this should be discussed with local transplant services.

Patients who wish to donate and are able to do so may require specific preparation before and after death. Specialist advice and guidance should be sought from the local organ transplant specialist nurses or service by contacting NHS Blood and Transplant directly (www.organdonation.nhs.uk).

It is possible for carers to become tired or ill, and informal carers may need particular support to understand the complexity of looking after dying patients (NEoLCP [101]). Often, discussions relating to the patient's preferences and wishes are extremely sensitive and need to be facilitated by an objective outsider who is able to voice the fears and concerns of all those involved. Identifying the needs of carers is an important aspect of nursing care, and one tool that can be helpful is the Carer Support Needs Assessment Tool (CSNAT) (Ewing et al. [48]). The CSNAT is an evidence‐based tool that facilitates tailored support for family members and friends (carers) of adults with life‐limiting condition. It comprises 14 domains (broad topic areas) in which carers commonly say they require support. Carers may use this tool to indicate further support they need in relation to enabling them to care for someone at home, as well as support for their own health and wellbeing within their caregiving role. The use of the CSNAT requires training and a licence.