Information for Health and Social Care Professionals

Definition of End of Life Care

“End of life care is care that:

Helps all those with advanced, progressive and incurable illness to live as well as possible until they die. It enables the supportive and palliative care needs of both patient and family to be identified and met throughout the last phase of life and into bereavement. It includes management of pain and other symptoms and provision of psychological, social, spiritual and practical support."

Source: National Council for Palliative Care 2006

North West End of Life Care Pathway

Specialist Palliative Care

This is the care of all patients who have active, progressive advanced disease for whom the prognosis is limited and the focus of care is on quality rather than quantity of life The specialist teams should include palliative medicine consultants and palliative care nurse specialists together with a range of expertise provided by physiotherapists, occupational therapists, dieticians, pharmacists, social workers and those able to give emotional spiritual, social and psychological support

Palliative Care

“...the active holistic care of patients with advanced, progressive illness. Management of pain and other symptoms and provision of psychological, social and spiritual support is paramount.
The goal of palliative care is achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with other treatments”
     Source: World Health Organization .National Cancer Control Programmes, policies and guidelines (2002)

Who Provides Palliative Care?

Palliative care is provided by two distinct categories of health and social care professionals:

• Those providing the day-to-day care to patients and carers in their homes and in hospitals
• Those who specialise in palliative care (consultants in palliative medicine and clinical nurse specialists in palliative care, for example)

Those providing day-to-day care should be able to:

• Assess the care needs of each patient and their families across the domains of physical, psychological, social spiritual and information needs
• Meet those needs within the limits of their knowledge, skills, competence in palliative care
• Know when to seek advice from or refer to specialist palliative care services

Supportive Care Defined

Supportive care helps the patient and their family to cope with their condition and treatment of it – from pre-diagnosis, through the process of diagnosis and treatment, to cure, continuing illness or death and into bereavement. It helps the patient to maximise the benefits of treatment and to live as well as possible with the effects of the disease. It is given equal priority alongside diagnosis and treatment.

Supportive care should be fully integrated with diagnosis and treatment. It encompasses:

• Self help and support
• User involvement
• Information giving
• Psychological support
• Symptom control
• Social support
• Rehabilitation
• Complementary therapies
• Spiritual support
• End of life and bereavement care

Source: National Council for Palliative Care (2002)

National Council for Palliative Care

The National Council for Palliative Care (NCPC) is the umbrella charity for all those involved in palliative, end of life and hospice care in England, Wales and Northern Ireland. We believe that everyone approaching the end of life has the right to the highest quality care and support, wherever they live, and whatever their condition. We work with government, health and social care staff and people with personal experience to improve end of life care for all.

NCPC is a registered charity number 1005671 and a company limited by guarantee number 2644430.

NCPC leads the Dying Matters coalition which aims to change public attitudes and behaviours around dying, death and bereavement. www.dyingmatters.org

North West Regional NCPC Representative

Julie Gorry
julieg@wirralhospice.org
Chief Executive, Wirral Hospice St John's.

Corresponding Geographical Region
Covers Merseyside, Cheshire, Lancashire, Greater Manchester and Cumbria.

Cancer Networks
Greater Manchester & Cheshire, Merseyside & Cheshire, Lancashire & South Cumbria.
http://www.ncpc.org.uk/in-your-area

North West Cancer Networks
www.gmccn.nhs.uk
http://www.endoflifecumbriaandlancashire.org.uk

Network agreed policies for palliative and End of Life Care
http://www.mccn.nhs.uk/professionals/documents.php

Advance Care Planning
http://www.endoflifecareforadults.nhs.uk/search/keywords:advance+care+planning+

Mental Capacity
www.publicguardian.gov.uk/mca/mca.htm

National End of Life Care Programme
www.endoflifecareforadults.nhs.uk/

National End of Life Care Intelligence Network
www.endoflifecare-intelligence.org.uk/

End of Life Care Strategy: promoting high quality care for all adults (2008)
www.endoflifecareforadults.nhs.uk/publications/eolc-strategy

National End of Life Care Strategy: quality markers and measures for end of life(2009)
www.dh.gov.uk/en/Publicationsandstatistics/.../DH_101681

National Council for Palliative Care
www.ncpc.org.uk

The Dying Matters coalition is encouraging people to talk about their wishes towards the end of their lives. It's in everyone's interest to talk about it, before it's too late.
www.dyingmatters.org/

Preferred Priorities for Care (PPC)
http://www.endoflifecareforadults.nhs.uk/tools/core-tools/preferredprioritiesforcare

Gold Standards Framework (GSF)
www.goldstandardsframework.org.uk

Liverpool Care Pathway for the Dying Patient (LCP)
http://www.liv.ac.uk/mcpcil/liverpool-care-pathway/

Six Steps Programme for Care Homes
www.endoflifecareforadults.nhs.uk/.../Six_Steps_to_Success_Programme_1.pdf