A – Z of End of Life Care Information Resources

The aim of the End of Care Strategy (DoH 2008) was to ensure that all professionals support all patients with advanced, progressive and incurable diseases regardless of diagnosis, stage or setting and to live as well as possible until they die.

The purpose of the A-Z of Resources is to support professionals who provide EoLC to maintain their knowledge and skills or to gain information on a new aspect of care in order to deliver good quality care to achieve the aim of the EoLC strategy.

A

Advance Care Planning

Definition: A process of discussion between an individual and their care providers, irrespective of discipline. If the individual wishes, their family and friends maybe included. With the individual’s agreement, this discussion should be documented, regularly reviewed and communicated to key people involved in their care. For example, preferred place of death, do not attempt resuscitation.

Henry C and Seymour J (2007) Advance Care Planning: A Guide for Health and Social Care Staff. Dept of Health http://www.ncpc.org.uk/sites/default/files/AdvanceCarePlanning.pdf

Advance Care Planning: A Guide for Health and Social Care Staff (National EoL Programme)

http://www.ncpc.org.uk/freedownloads

ADSE – it all adds up

http://www.nhsiq.nhs.uk/resource-search/publications/eolc-acp-guide.aspx

Advance Care Planning – Support sheet 3 (National EoL

Programme)

http://www.gloucestershireccg.nhs.uk/wp-content/uploads/2012/03/supportsheet3_1.pdf

Advance Care Planning – Planning for Your Future Care

http://www.ncpc.org.uk/freedownloads

Advance Decisions to Refuse Treatment: A guide for Health and Social Care Professionals

http://www.nhsiq.nhs.uk/resource-search/publications/eolc-acp-guide.aspx

Advocacy – your guide to advocacy

www.asist.co.uk

Differences between general care planning and decisions made in advance

http://www.nhsiq.nhs.uk/resource-search/publications/eolc-acp-guide.aspx

Age UK

Is a nationwide charity that supports older people with information and advice on daily matters of life e.g. access to health and social care, financial, citizen rights.

http://www.ageuk.org.uk

B

Bereavement

For most of us, bereavement will be the most psychologically distressing experience we will ever face. Grief is what we feel when somebody we love dies. The death of a significant person is a devastating loss. Everyone experiences grief differently and there is no 'normal' or 'right' way to grieve. How we react will be influenced by many different things, including our age and personality, or cultural background and religious beliefs, our previous experiences of bereavement, our circumstances and how we cope with loss.

CRUSE

http://www.cruse.org.uk/about-grief

Tell me once leaflet

https://www.gov.uk/after-a-death/organisations-you-need-to-contact-and-tell-us-once

Best Interest Decisions (see Mental Capacity Act)

C

Capacity

Capacity Assessment

http://www.bma.org.uk/ethics/consent_and_capacity/assessmentmentalcapacity.jsp

Capacity, Care Planning And Advance Care Planning In Life Limiting Illness

http://www.ncpc.org.uk/freedownloads

Care Homes

Introductory Guide to End of Life Care in Care Homes

http://www.ncpc.org.uk/freedownloads

Care after Death

See under “The Route to Success” Support Sheet Series http://webarchive.nationalarchives.gov.uk/20130718121128/http:/endoflifecare.nhs.uk/search-resources/route-to-success-resources/support-sheets.asp

Carers

Carers Direct www.nhs.uk/carersdirect

Skills for care website with Carers business – everybody’s business www.skillsforcare.org.uk

Children

Marie curie Leaflets for children

http://www.mcpcil.org.uk/resources-and-links.aspx

Continuing Health Care

See under “The Route to Success” Support Sheet Series http://webarchive.nationalarchives.gov.uk/20130718121128/http:/endoflifecare.nhs.uk/search-resources/route-to-success-resources/support-sheets.asp

Consent

http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/publichealth/scientificdevelopmentgeneticsandbioethics/consent/index.htm

Communication

Communicating with someone with dementia

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=130

In End of Life Care

See under “The Route to Success” Support Sheet Series http://webarchive.nationalarchives.gov.uk/20130718121128/http:/endoflifecare.nhs.uk/search-resources/route-to-success-resources/support-sheets.asp

Finding the Words

http://www.nhsiq.nhs.uk/resource-search/publications/eolc-finding-the-words.aspx

Commissioning

http://www.nhsiq.nhs.uk/resource-search/publications/eolc-commissioning-toolkit.aspx

D

Dignity

Treating every individual with respect and enabling them to maintain independence, choice and control.

See under “The Route to Success” Support Sheet Series http://webarchive.nationalarchives.gov.uk/20130718121128/http:/endoflifecare.nhs.uk/search-resources/route-to-success-resources/support-sheets.asp

http://www.dignityindying.org.uk/

Dementia

http://www.dementiauk.org/

http://www.ncpc.org.uk/freedownloads?page=1

Dying Matters

http://www.dyingmatters.org/

Dying process

See under “The Route to Success” Support Sheet Series http://webarchive.nationalarchives.gov.uk/20130718121128/http:/endoflifecare.nhs.uk/search-resources/route-to-success-resources/support-sheets.asp

E

Education

E learning - ELCA

www.elca.org.uk

www.sweolc.co.uk The support website developed through Health Education South West to assist providers in getting their staff signed up to e-LfH end of life care and dementia courses.

End of Life

End of Life Programme now NHS Improving Quality

http://www.endoflifecareforadults.nhs.uk/

http://www.nhsiq.nhs.uk/improvement-programmes/long-term-conditions-and-integrated-care/end-of-life-care.aspx

End of Life Care Strategy

http://www.ncpc.org.uk/freedownloads?page=2

End of Life Care in Advanced Kidney Disease: A Framework for Implementation

http://www.ncpc.org.uk/freedownloads?page=1

Easy Read Information

Let’s talk about death

http://www.downs-syndrome.org.uk/

Living and Dying with Dignity

https://www.mencap.org.uk/about-learning-disability/information-professionals/health/end-life-care

F

Find Me Help | Dying Matters

http://get.findmehelp.org.uk/

Funeral Planning

www.funeralplanningauthority.com/

G

Gold Standards Framework

The Gold Standards Framework is a systematic common-sense approach to formalising best practice, so that quality end of life care becomes standard for every patient. It helps clinicians identify patients in the last years of life, assess their needs, symptoms and preferences and plan care on that basis, enabling patients to live and die where they choose. GSF embodies an approach that centres on the needs of patients and their families and encourages inter-professional teams to work together. GSF can help coordinate better care provided by generalists across different settings.

http://www.goldstandardsframework.org.uk/

H

Homeless in EoLC

Achieving quality care for the Homeless and Hostels

http://www.nhsiq.nhs.uk/resource-search/publications/eolc-rts-hostels-and-homeless.aspx

See also under “The Route to Success” Support Sheet Series http://webarchive.nationalarchives.gov.uk/20130718121128/http:/endoflifecare.nhs.uk/search-resources/route-to-success-resources/support-sheets.asp

Hospices

http://www.hospiceuk.org/

Hospitals

http://www.nhsiq.nhs.uk/improvement-programmes/long-term-conditions-and-integrated-care/end-of-life-care/acute-hospital-care.aspx

Holistic Needs Assessment

http://www.nhsiq.nhs.uk/resource-search/publications/eolc-hca-guide.aspx

See under “The Route to Success” Support Sheet Series http://webarchive.nationalarchives.gov.uk/20130718121128/http:/endoflifecare.nhs.uk/search-resources/route-to-success-resources/support-sheets.asp

Housing

http://www.housinglin.org.uk/_library/Resources/Housing/Support_materials/Other_reports_and_guidance/EoLC_Learning_Resource_Pack_Housing.pdf

I

Identification

Find your 1% Campaign

http://www.dyingmatters.org/gp

Independent Mental Capacity Advocates (IMCAs)

https://www.gov.uk/government/collections/mental-capacity-act-making-decisions

J

Just in case boxes

A box (normally plastic) either that contains anticipatory medication for the main symptoms at the end of life e.g. nausea/vomiting, pain or recommendations for anticipatory prescribing (e.g. midazalom) with the necessary equipment to deliver subcutaneous medication.

http://www.goldstandardsframework.org.uk/

K

Kings Fund

The Kings Fund is a charity that seeks to understand how the health system in England can be improved. Using that insight, we help to shape policy, transform services and bring about behavioural change.

http://www.kingsfund.org.uk/

L

Library resources

www.library.nhs.uk to access electronic books, journals user guide

Living with an illness that I may die from

A Guide for Professionals offering Palliative Care & Support

http://www.heartofengland.nhs.uk/equality-and-diversity/guide-for-professionals-offering-palliative-care-and-support/

A Carers Guide

http://www.heartofengland.nhs.uk/equality-and-diversity/a-carers-guide/

M

Making health information easier – A Picture of Health http://www.apictureofhealth.southwest.nhs.uk/

Mental Capacity Act (2005)

www.legislation.gov.uk/ukpga/2005/9/contents

Mental Capacity Act (2005) Decision Making Pathway http://www.psl.cswebsites.org/Libraries/Local/982/Docs/Walsall%20Council/Decion_Making_Pathway[1].pdf on.pdf

Marie Curie

www.mariecurie.org.uk/

Macmillan Cancer Support

www.macmillan.org.uk

N

National Institute for Health and Clinical Excellence

http://www.nice.org.uk/

National Council for Palliative Care

http://www.ncpc.org.uk/

Free download of resources from NCPC

http://www.ncpc.org.uk/freedownloads

O

Out of Hours

The need for good proactive in-hours care is to prevent out of hours calls being inappropriately dealt with. This includes reducing 999 calls, reducing un-needed hospital admissions, reducing inappropriate resuscitation attempts, improving the handling of such patients by ambulance and A&E staff, and improving symptom relief.

http://www.goldstandardsframework.nhs.uk

Office of Public Guardian

http://www.publicguardian.gov.uk/mca/code-of-practice.html

P

Preferred Priorities for Care

http://dyingmatters.org/sites/default/files/preferred_priorities_for_care.pdf

Person Centred care e.g. care planning

See under “The Route to Success” Support Sheet Series http://webarchive.nationalarchives.gov.uk/20130718121128/http:/endoflifecare.nhs.uk/search-resources/route-to-success-resources/support-sheets.asp

Prognostic Indicator Guidance (GSF)

http://www.goldstandardsframework.org.uk/

Q

Quality Markers

http://www.londonhp.nhs.uk/wp-content/uploads/2011/03/DH-EOLC-strategy.pdf

Quality Standards – NICE guidelines

http://www.nice.org.uk/guidance/qs13

R

Route to Success Series

Resources that provide guidance on how to achieve high quality care in different care settings based on the 6 Steps of the EoL Pathway:

Acute Hospitals

http://www.nhsiq.nhs.uk/improvement-programmes/long-term-conditions-and-integrated-care/end-of-life-care/acute-hospital-care.aspx

Care Homes

http://www.nhsiq.nhs.uk/resource-search/publications/eolc-rts-care-homes.aspx

Domiciliary Care

http://www.nhsiq.nhs.uk/resource-search/publications/eolc-rts-dom-care.aspx

Homeless

http://www.nhsiq.nhs.uk/resource-search/publications/eolc-rts-hostels-and-homeless.aspx

Learning Disabilities

http://www.nhsiq.nhs.uk/resource-search/publications/eolc-rts-learning-disabilities.aspx

Lesbian, Bisexual, Gay and Transexual

http://www.macmillan.org.uk/Documents/AboutUs/Health_professionals/EndofLifeCare-LGBTRoutetoSuccess.pdf

Occupational Therapy

http://www.nhsiq.nhs.uk/resource-search/publications/eolc-rts-ot.aspx

Prisons

http://www.nhsiq.nhs.uk/resource-search/publications/eolc-rts-prisoners.aspx

Social Work

http://www.nhsiq.nhs.uk/resource-search/publications/eolc-rts-social-work.aspx

S

Supporting people

Support People with Disabilities coping with grief and loss http://www.scopevic.org.au/index.php/site/resources/supportingpeople

Symptom control

http://www.goldstandardsframework.org.uk/

Social Care (Knowledge sets for Social Care)

www.skillsforcare.org.uk

T

The Route to Success support sheets

A range of support sheets have been produced to accompany “The route to success series” http://webarchive.nationalarchives.gov.uk/20130718121128/http:/endoflifecare.nhs.uk/search-resources/route-to-success-resources/support-sheets.aspx

Directory of Key Contacts

Principles of Good Communication

Advance Care Planning

Advance Decisions to Refuse Treatment

Quality Markers for Care Homes

Dignity in end of life care

Models/Tools of Delivery

The Dying Process

What to do when someone dies

Flow Chart for Supportive Care: Care Home / Sheltered Housing

Quality Markers for Acute Hospitals

Mental Capacity Act

Decisions made in a person's best interests

Using the NHS Continuing Health Care Fast Track Pathway Tool

Enhancing the Healing Environment

Holistic assessment

Independent Mental Capacity Advocates

Preferred Priorities for Care

U

V

W

What do we know now?

http://www.endoflifecare-intelligence.org.uk/resources/publications/what_we_know_now_2013

Working with vulnerable people

http://www.nhs.uk/CarersDirect/guide/vulnerable-people/Pages/vulnerable-adults.aspx

Working with a person with learning disabilities in a hospital situation.

http://www.nhs.uk/Livewell/Childrenwithalearningdisability/Pages/Going-into-hospital-with-learning-disability.aspx

What to do when someone dies

What to do after a death in England and Wales http://www.dwp.gov.uk/docs/dwp1027.pdf

What to do after someone dies

https://www.gov.uk/after-a-death

X

Y

Young People with Cancer (15-24 year olds)

www.teenagecancertrust.org

http://www.clicsargent.org.uk/

http://www.macmillan.org.uk/Cancerinformation/teensandyoungadults/Infoforteensandyoungadults.aspx

http://www.nhs.uk/young-cancer-care/Pages/index.aspx

https://jtvcancersupport.com/

http://www.youthhealthtalk.org/Teenage_Cancer/

Z