Excellent communication is vital in all areas of nursing practice but arguably more so when dealing with dying patients and their relatives. If patients and their family and carers are to make educated end‐of‐life decisions, they need to have nurses who can engage with them and have open, honest and unambiguous dialogue (Wilson [166]). Nurses must have the confidence to raise the issue of planning for future care and death, and they must also be able to respond to issues and concerns raised by the patient and/or their family and carers (Henry and Wilson [59]).

Do Not Attempt Cardiopulmonary Resuscitation (DNaCPR) discussions with patients and their families have been subjected to intense ethical and legal debate in recent years (Hall et al. [56]). In October 2014, the Resuscitation Council, the British Medical Association and the Royal College of Nursing reviewed their guidance for doctors making decisions about DNaCPR orders (BMA, RC & RCN [13], Etheridge and Gatland [46]). This revised guidance followed the Court of Appeal decision in 2014 in the case of Tracey v Cambridge University Hospitals – a case that resulted in two important amendments to resuscitation guidelines. The first change refers to the fact that patient distress is no longer a good enough reason not to discuss DNaCPR with patients unless it is deemed likely to cause the patient physical or psychological harm. The second change is that even if doctors feel resuscitation would be futile, a discussion should still occur; futility is not seen as an argument for not discussing DNaCPR (Etheridge and Gatland [46]).

Timing of discussions should be individualized, although discussions earlier in the illness are often preferable in line with other discussions relating to advance care planning. Discussions held in the acute setting are suboptimal. DNaCPR decisions should be part of a wider discussion about future care and adequate communication skills training is important (Mockford et al. [95]).

The Resuscitation Council endorses the ReSPECT document (https://www.respectprocess.org.uk) (Figure 11.3). ReSPECT is a process that creates personalized recommendations for clinical care in a future emergency in which individuals are unable to make or express choices. It provides health and social care professionals responding to that emergency with a summary of recommendations to help them make immediate decisions about the person's care and treatment. ReSPECT can be complementary to a wider process of advance care planning. The plan is created through conversations between a person and their health professionals. The plan is recorded on a form and includes the person's own priorities for care and agreed clinical recommendations about care and treatment that could help to:

ReSPECT can be used for anyone, but it has particular relevance for people who have complex health needs, people who are likely to be nearing the end of their lives, and people who are at risk of sudden deterioration or cardiac arrest.

There are tools available to guide clinicians in making prognoses in palliative care. Prognostat is one such tool and is available online (Glare et al. [54]). The clinical act of prognostication in advanced cancer is often based on two approaches. The first involves clinical prediction of survival by an appropriate clinician. The second approach, referred to as ‘actuarial prognostication’ relies on statistical data such as median survival rates (Glare et al. [54]). Clinicians must be able to communicate the prognosis to the patient in a meaningful way and at the pace of the patient.

The principles of breaking potentially bad news should be adhered to in undertaking discussions about prognosis.

The importance of individually tailored care for those in the terminal phase of their lives, and their relatives, cannot be overemphasized. No framework, pathway or care plan is a substitute for careful assessment, information giving, listening, referral and skilled intervention. Each person will require slightly different care in one way or another, and assumptions should never be made solely on the basis of previous preferences, or sociocultural or religious stereotypes.

However, some principles and interventions are important and should be routinely considered. These are outlined in Figure 11.4, which provides an algorithm for the principles of care for dying patients. These principles should reflect the ethos of palliative care and integrate the physical, psychological, social and spiritual aspects of care (Watts [162]). In addition, Figure 11.5 provides a sample care plan that can act as a supportive document or framework. Both examples were developed by the London Cancer Alliance ([81]) and can be customized and used in the hospital setting or modified for other areas. Both prompt clinical teams to remember to address the personalized needs of the patient and their family.

In the final stages of life, the focus is on optimizing symptom control and relieving distress. Common symptoms experienced at the end of life include pain, dyspnoea, nausea and vomiting, and sometimes an increase in respiratory secretions (leading to the ‘death rattle’). Bowel obstruction and ascites are also distressing symptoms that may need management. Delirium may be apparent with some patients and can be distressing for both the patient and their family. Appropriate treatment regimens should be in place to manage these symptoms. Some of these are discussed below.

It is important to remember that as a patient begins to die, swallowing may become increasingly difficult. Therefore, the route of medication administration may need to be altered (Lacey [77]).

Pharmacological support can be used in various ways to improve the quality of life of patients with severe, life‐limiting illness. Depending on a person's position on the disease trajectory and their goals of care, drugs, including chemotherapy, may be prescribed to actively treat the disease; prevent, reduce or eliminate symptoms; or slow the disease process. Antibiotics may also still have a place in the terminal phase – for example, a patient may choose to have antibiotics to treat a symptomatic urinary tract infection but may decline to have antibiotics to treat a recurring episode of severe pneumonia.

Various medications and combinations of medications are used for the control of symptoms during end‐of‐life care. These are discussed in more detail in each individual section below and a summary of recommended medications is outlined in Table 11.1.

Choice of medication for pain should be guided by current and previously tried analgesics, adjuncts and techniques. Further information is detailed in Chapter c10: Pain assessment and management.

Currow et al. ([32]) report that 20% of people take at least eight medications at the time of referral to a specialist palliative service, adding that many people admitted to palliative care services have an increase in prescribed medications as death approaches. They point out that frail and vulnerable patients have diminished capacity for withstanding adverse drug reactions, which increases the risk of iatrogenic harm. There is, therefore, a greater responsibility on those prescribing medication to palliative patients to optimize all medications, balancing benefit and risk, monitoring and adjusting for each individual in the context of a changing clinical picture (Currow et al. [32]). Cessation of long‐term medications often occurs as a result of suspected adverse drug reaction or loss of the oral route of administration. However, cessation of long‐term medications without careful discussion with patients or their families carries the potential for both physiological and psychological harm (Lacey [77]). It can be extremely difficult for patients or families who for a lifetime have monitored blood glucose levels to suddenly let go of this practice.

However, in the terminal phase of the patient's life, all medications will be reviewed. At this time only essential medications should be administered, and this should be done through the least invasive route possible (Lacey [77]). As a person enters the terminal phase, there may also be changes to their renal function. Careful monitoring and adjustment of medications is required – for example, there may be signs of opioid toxicity and an alternative renal‐sparing opioid may be considered.

Non‐pharmacological approaches to physical and psychological symptoms may be of benefit to patients receiving end‐of‐life care (Booth et al. [16]). Non‐pharmacological measures can help to empower patients at a time when the majority of their symptom management is prescriptive. As an example, there is a body of literature concerning the non‐pharmacological management of breathlessness (Booth et al. [16], Chin and Booth [25], Corner et al. [30]). This literature advocates the involvement of the multidisciplinary team to draw on all resources available – for example, using the physiotherapist to give advice on breathing exercises and the occupational therapist to teach relaxation techniques; this is discussed further later.

Florence Nightingale ([111]) wrote of the effect that the environment had on health, highlighting the negative effects of factors such as noise as well as lack of air, light and sleep. Booth et al. ([16]) also advocate assessment of the environment, acknowledging the benefits of a bright, well‐ventilated room.

The essence of non‐pharmacological interventions is both holistic and heuristic (Taylor [148]). Nurses, who often spend more time than other healthcare professionals with patients during end‐of‐life care, are often best placed to assist patients with non‐pharmacological interventions. The element of reassurance or ‘presence’ is very important – for example, knowing when to touch or not to touch a patient or relative, when to simply sit quietly with the patient or when draw up a chair for a deeply anxious relative. Nursing routines, performed in a calm and reassuring manner, bring normality to interactions, providing a sense of safety and security. These fundamental aspects of care are often extremely simple but are not always evident to those who do not have experience or specialist skills in relation to caring for patients receiving end‐of‐life care. Other examples of non‐pharmacological interventions and support at the end of life are relaxation techniques, counselling, music therapy, art and pet therapy (Clements‐Cortés [29], Engelman [45], Safari [131]).

Physical discomfort can be one of the greatest concerns as patients with a terminal illness anticipate dying (NICE [107]). National guidance advises that patients expect to be offered optimal symptom management at the end of life and recommends that this should be achieved in all healthcare settings (NEoLCP [101]).

There should be a holistic assessment of the patient's needs followed by comprehensive care planning and regular reviews of symptoms (NEoLCP [101]). Nurses should be competent to build on this assessment in a dynamic, sensitive, consistent manner and to observe and record subtle changes (NEoLCP [101]). Some of the physiological changes that occur at the end of life are outlined in Box 11.1.

Changes in blood perfusion, increased weakness and reduced mobility increase the risk of pressure area injury. Consider a pressure‐relieving mattress and cushion (if appropriate) (Langemo et al. [78]).

Decreased urinary output may occur in relation to the reduced oral intake (if artificial hydration is not being administered) as well as reduced perfusion to the kidneys. Incontinence may also ensue; planning for this with the use of pads or catheterization may need to be considered. Inability of the patient to urinate can often contribute to agitation at the end of life, so there is a need to assess for possible urinary retention.

A reduced interest in food and fluid coupled with profound weakness is not uncommon at the end of life; however, this can be distressing for families and loved ones. As a patient's level of consciousness reduces, the risk of dysphasia and possible aspiration is higher (Lacey [77]). The use of artificial fluids is addressed above. At this point, discontinuing non‐essential medications should be considered, as should an alternative route for medications (e.g. converting from oral to subcutaneous).

Retained chest secretions may become evident in the last hours to days of life (Hui et al. [68]). This symptom has been found to occur in approximately 50% of patients at the end of life (Hui et al. [68]). Medications can be considered with the aim of reducing secretions in the upper airway that can occur as a result of pooling of saliva, with reduced swallowing reflexes and an inability to expectorate (Lacey [77]).

Delirium (presenting as confusion and agitation) should initially be managed by excluding any causative factors, such as urinary retention, faecal impaction, medications, electrolyte disturbances, organ failure or sepsis (Lacey [77]); treat these as appropriate. Once these have been excluded or if their treatment would be inappropriate, manage the delirium by optimizing the patient's environment and reorientating them to time and place regularly. Consider haloperidol for any patient who displays distress. Midazolam or lorazepam may be required if haloperidol is ineffective (Hosker and Bennett [63]).

Meeting the physical needs of patients at the end of life is aimed at providing as much comfort as possible. The change from acute active management to end‐of‐life care often requires a larger focus towards providing comfort with the least invasive procedures, and maintaining privacy and dignity becomes paramount.

Psychosocial issues can greatly impact those who are dying. Establishing how to best support a patient and their family through this time requires an understanding of these issues (Detering et al. [35], Lacey [77], Steinhausser et al. [144]).

Provision of psychosocial care and support may need to be adjusted according to the changing needs of the patient – many will experience increasing anxiety and distress, increased feelings of social isolation and, alongside this, a decrease in physical energy available to them for dealing with these concerns (Hudson et al. [67]). Relatives will naturally be distressed by the deterioration of the patient and may exhibit signs of grief even before death occurs. Nurses should ensure that, wherever possible, the physical environment is conducive to patients and relatives being able to express their thoughts and emotions, and that appropriately trained staff are available to listen and support them (Hudson et al. [67], NEoLCP [101]).

Alleviating distress when patients no longer feel connected with the world and are angry that their body has failed them can be challenging for healthcare professionals. Patients may find it difficult to discuss threats to their personhood and it is only through effective communication and interpersonal skills that nurses can address these issues (Lacey [77]).

The importance of psychosocial care should never be underestimated, and psychological management should be considered just as important as physical management across primary, acute and tertiary care (Lacey [77]). All healthcare professionals need to understand and recognize patients with complex psychosocial needs and be able to make comprehensive assessments of the distressing issues that patients may face. Nurses should be aware of their own limitations in this area and seek the support of specialists when needed.

Psychological, social and spiritual factors may exacerbate physical suffering. For instance, depression amplifies pain and other somatic symptoms (Goesling et al. [55]). When physical, psychological and spiritual sources of distress are inseparably intermixed, causing ‘total pain’ (Saunders [134]), a fully integrated clinical approach that addresses the multiple dimensions of suffering is required, looking at the individual needs of the patient from all perspectives.

Considerable energy and debate continue to be devoted to defining and exploring the concept of spirituality and its relationship to religion (NEoLCP [101]). Spiritual care has risen in visibility in health services over the past three decades, from a position where it was equated with religious care and regarded as the sole province of chaplains to one where a broad concept of spirituality is employed and spiritual care is recognized as having relevance for all sectors. However, this perceptual shift has not necessarily occurred at the level of practice and there is evidence of continuing uncertainty and ambiguity over how, when and where spiritual need should be addressed (Phelps et al. [119]).

In the UK, the Guidelines for Hospice and Palliative Care Chaplaincy affirm that assessment of spiritual and religious need should be available to all patients and carers, including those of no faith (AHPCC [3]). Exploring spiritual needs is defined as exploring the individual's sense of meaning and purpose in life. This involves attitudes, beliefs, ideas, values and concerns around life and death issues; affirming life and worth by encouraging reminiscence about the past; and exploring the individual's hopes and fears regarding the present and future. Each patient and their relatives should have the opportunity to express, in advance, any religious, cultural or practical needs they have for the time of death or afterwards, particularly regarding urgent release for burial or cremation. This can be done as part of the advance care planning process or it can be completed nearer the point of death (Wilson [166]). It is important to try to discuss these issues with the patient, as even where relatives share a common faith, as there may be differences in the way each person practises. It is vital that assumptions are not made on the basis of a previously disclosed religious preference. Further information about religious and cultural perspectives and practices is given in Table 11.2. A person's religion and culture is central to their well‐being and patients will receive great comfort from practising their faith and from having their religious and cultural needs recognized and respected.