The Office for National Statistics (2019) reported 541 589 registered deaths in England and Wales in 2018, an increase of 1.6% compared with 2017, and the highest number of annual deaths since 1999. The number of deaths and age-specific mortality rates for people 90 years and over also increased. With an ageing population, and an increasing incidence of long-term conditions (some cancers fitting into this category as well as dementia) there will be a growing emphasis on end-of-life care provision (National Palliative and End of Life Care Partnership, 2015).
In order to provide high-quality end-of-life care, understanding what is meant by the term is crucial. Within the literature, and among professionals, the terms ‘end of life’, palliative care and terminal care are often used interchangeably; however, each term has distinct differences and prognostic implications (Hui et al, 2014). It is imperative that nurses and other health professionals understand the defining characteristics of each term, so that they can recognise the phase appropriate for the patient and be able to respond to their care needs in a timely manner.
Palliative care
Palliative care is an approach that encompasses comfort focused, holistic care for any patient with a life-limiting illness, including patients who are receiving curative treatment. The focus is on enhancing quality of life, by promoting comfort, respect and dignity, and supporting the dying person and those close to them. The approach can be used at any point within the patient's disease trajectory. The World Health Organization (2020) recognises that palliative care is applicable to patients early on in their illness, and used alongside life-prolonging treatments, such as chemotherapy and radiotherapy, with some people receiving palliative care for years. However, it does include caring for those nearing the end of their lives. This is known as end-of-life care.
End-of-life care
The End of Life Care Strategy (Department of Health (DH), 2008) suggested that end-of-life care planning should commence for patients who are expected to die within 12 months. However, it went on to state that identifying the beginning of end-of-life care is variable, and depends on the person (who may recognise that they are approaching end of life), professional perspective, the disease, and the stage that the patient is at within the disease trajectory. The principles of palliative care are embedded in end-of-life care, with the focus on enabling patients with an advanced, progressive, incurable illness to live as well as possible until they die; this includes supporting the needs of the patient, family, and having a management plan to support their holistic needs (Leadership Alliance for the Care of Dying People (LACDP), 2014).
Terminal care
There is a great deal of ambiguity around the meaning of the term dying, with it sometimes being used in the same context as palliative and end-of-life care. Nyatanga (2017) suggested that people are thought to be dying when their view of living is threatened by a life-limiting illness, whereas Hui et al (2014) defined dying as the hours or days preceding imminent death.
Five priorities of care
Defining the point at which a patient may be nearing the end of their lives or dying is dependent on several factors (Box 1), and regardless, there should be a continuum of care including an ongoing assessment of patient and family needs and responding in an appropriate and timely manner (LACDP, 2014). Following an independent review of the Liverpool Care Pathway, which highlighted inconsistencies in the provision of good end-of-life care, one of the key recommendations was that it should be phased out (Neuberger et al, 2013). In response, the LACDP (2014) published a response in One Chance to Get it Right, highlighting five ‘Priorities of Care’ (Box 2) based on the wishes of the dying patient and family, rather than the processes. A key consideration is that these priorities can be applied regardless of the environment, with the focus being on the provision of high-quality, patient-centred care.
Priority 1: recognising
The LACDP (2014) suggests that the point at which treatment ends, and care becomes palliative, should be a continuum, where the patients' needs are constantly assessed by a senior clinician and responded to in a timely and sensitive manner. Sharing the uncertainty, and voicing concerns that the patient may be dying with the patient (if conscious) and family is the most honest approach and a deterioration in the patient's condition should be the trigger for expressing these concerns (Regan et al, 2014).
However, it has already been established that recognising the possibility that a patient may be approaching end of life, or indeed dying, is difficult. The Gold Standards
Framework (GSF) (National Gold Standards Framework Centre in End of Life Care, 2016) is a framework used in the community, in care homes and in acute setting that enables early recognition of patients with life-limiting conditions, and as a result the patient's needs can be better anticipated and addressed and important conversations, regarding future planning and the patient's wishes, can happen in a timely manner. The GSF provides a three-step approach with general and specific considerations to aid health professionals in making a decision that a patient may be deteriorating. This Proactive Identification Guidance (National Gold Standards Framework Centre in End of Life Care, 2016) considers:
However, as Kennedy et al (2014) pointed out, the complexity of identifying clinical indicators of dying across different diseases is challenging, and therefore should be based on patient needs rather than the diagnosis.
Priority 2: communication
Open and honest communication with the dying patient and those important to them is paramount. The LACDP (2014) recommends that all discussions should be in plain language, appropriate and avoid euphemisms. All documentation should be accessible to all members of the healthcare team who are involved in the patient's care. Communication should be regular, proactive, and respect the privacy and confidentiality of the person who is dying and those important to them. Staff must also check the patient and others' understanding, clearly documenting any conversations occurring in relation to treatment goals, plan of care, prognosis and any concerns raised by the patient or those important to them. These conversations should be ongoing, taking into consideration changes in the patient's condition and whether or not the patient has capacity, as set out in the Mental Capacity Act 2005 (MCA) (Robinson et al, 2013).
Priority 3: involve
In the first instance, it is important to ascertain the extent to which patients want to be involved in decisions about their care, as patients and those important to them differ in their wish to be involved in decisions around care and treatment. Healthcare staff need to sensitively enquire how much each person wants to be involved at each stage and, in order to accomplish this, the dying patient and their family, must be given the names of the senior doctor responsible for their care and then the name of the nurse responsible for leading care (LACDP, 2014). Consideration should also be given to patients who have lost capacity. For those who have lost capacity, any decision made must be in their best interests and involve the patient as much as possible, in line with the MCA.
Priority 4: support
Families and those important to the dying person have their own needs, which can be overlooked by themselves and others during this difficult period (Broom and Kirby, 2013). Therefore, health professionals must regularly assess and address the needs of families and those important to the dying person, as the family's experience of a loved one's final illness and death impacts on their own responses to future health care (Sykes, 2015). Health professionals must ensure that even those who appear to be coping are supported and their needs actively explored. It is worthwhile considering that carers may wish to participate in caring for the dying person and must be supported by staff to do so (LACDP, 2014).
Priority 5: plan and do
An individual plan of care should be developed in collaboration with the patient and those important to the patient, in order to meet the patient's care needs and treatment preferences (LACDP, 2014). This plan should be regularly reviewed as the patient's wishes and condition may change. Two crucial findings from the Neuberger et al (2013) review were the discovery that hydration and nutrition were being inappropriately withheld from dying patients, and symptom control was not individualised. Therefore, it is important that patients are offered:
Conclusion
Recognising the point at which a patient with a life-limiting illness may be approaching the end of life or indeed dying is difficult. Therefore, it is imperative that nurses identify and respond in a timely manner to a change in the patient's condition, and use the Proactive Identification Guidance, which will enable them to recognise that a patient may be approaching the end of life. Application of the Priorities of Care framework ensures that the patient receives individual, patient-centered holistic care, and the needs of those important to the patient are also considered, for as Dame Cicely Saunders (1918-2005) famously said: ‘How people die remains in the memory of those who live on’.