Palliative and end of life care

What is palliative and end of life care?

The World Health Organization’s definition is:

"An approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual."

Palliative care:

• Provides relief from pain and other distressing symptoms.

• Affirms life and regards dying as a normal process.

• Intends neither to hasten nor 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 families cope with bereavement and the patient’s illness.

• 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.

The ‘Commissioning Guidance for Specialist Palliative Care: Helping to deliver commissioning objectives’, provides a useful breakdown.

General(ist) palliative care

Services in all sectors providing day-to-day care to patients with advanced disease and their carers, designed to alleviate symptoms and concerns, but not expected to cure the disease. Adapted from: Improving Supportive and Palliative Care for Adults with Cancer, 2004.

Specialist palliative care

Specialist palliative care is the active, total care of patients with progressive, advanced disease and their families. Care is provided by a multiprofessional team who have undergone recognised specialist palliative care training. The aim of the care is to provide physical, psychological, social and spiritual support.

Source: Tebbit, National Council for Palliative Care, 1999.

It is clear from these definitions that a wide variety of professionals in NHS primary, community, mental health and acute services, as well as social care, independent hospices, the nursing and care home sector, voluntary services and spiritual/religious leaders need to be involved and that commissioning good palliative care services is not necessarily a straightforward matter.

Defining end of life care

The General Medical Council (2010) has defined end of life in the manner described below, and the National Institute for Health and Care Excellence adopted the same definition in its Quality Standard for End of Life Care for Adults which was published in 2013:

• Advanced, progressive, incurable conditions.

• General frailty and co-existing conditions that mean they are expected to die within 12 months.

• Existing conditions if they are at risk of dying from a sudden acute crisis in their condition.

• Life-threatening acute conditions caused by sudden catastrophic events.

This includes people who are likely to die within 12 months. However, as a result of the complexities associated with identifying when individuals enter the end of life phase, many patients will require access to end of life services for more than a year. This includes support for families and carers plus care provided by health and social care staff in all settings.