Chapter 11: Symptom control and care towards the end of life
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End‐of‐life care
Definition
There is considerable ambiguity surrounding the terms ‘palliative care’, ‘terminal care’ and ‘end‐of‐life care’. They are often used interchangeably but are not synonymous.
Palliative care
Palliative care is the active, total care of a patient whose disease is not responsive to curative treatment. Control of pain, other symptoms, and social, psychological and spiritual problems is paramount. Palliative care affirms life and regards dying as a normal process: it neither hastens nor postpones death (WHO [163]). Recent advances in healthcare mean that many people now live with advanced, incurable illness for many years. This has been acknowledged by the World Health Organization (WHO), which in 2002 reviewed its definition of palliative care to advise that this type of care may be applicable earlier in the disease trajectory:
Palliative care:
- provides relief from pain and other distressing symptoms;
- affirms life and regards dying as a normal process;
- intends neither to hasten or postpone death;
- integrates the psychological and spiritual aspects of patient care;
- offers a support system to help patients live as actively as possible until death;
- offers a support system to help the family cope during the patient's illness and in their own bereavement;
- uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
- will enhance quality of life, and may also positively influence the course of illness;
- is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications. (WHO [163], p.1)
Palliative care, with its gradual shift in transition from curative and life‐prolonging treatment towards managing quality of life, can relieve significant medical burdens such as unwanted interventions that may have no ongoing benefit to the patient. It can also maintain a patient's dignity and comfort.
End‐of‐life care
End‐of‐life care is defined as care of patients who are likely to die within 12 months. It refers to patients who have advanced, progressive, incurable conditions and patients with life‐threatening acute conditions. It also covers support for their families and carers (NICE [109]).
The term ‘families and carers’ is used throughout this chapter, although it is acknowledged that not all family are carers and not all carers are family. The term ‘family’ or ‘families’ is also used to describe anyone close to the patient, who may or may not be related.
Terminal care
The ‘terminal phase’ is defined as a period of irreversible decline in functional status prior to death. It can last from hours to days and on some occasions weeks.
