The information we have listed here comes from some of the local or national websites that we hope are of interest or help to you. They are websites that healthcare professionals, with knowledge of an advance care planning use.
It’s not always easy to read or talk about advance care planning or dying. Take your time. You don’t have to do it all at once. You may want to pause or skip some of the information and resources, or wait and discuss with your family and friends.
General website links are listed here in alphabetical order:
Specific subject links are listed under the relevant heading in the ‘specific’ section.
Advance Decisions Assistance [Useful for discussion and documentation]
A helpful website with comprehensive information about Advance Decision to Refuse Treatment. The link to the main website is here
Age UK [Useful for thinking, discussing, deciding, documenting and sharing]
Useful website from Age UK the country’s largest charity dedicated to helping everyone make the most of later life. Includes useful documents to download and links to other sites.
- An overview of end of life issues is available here
- End of life care information for the lesbian, gay, bisexual and transgender community is here
Alzheimer’s Society [Useful for thinking, discussing, deciding, documenting and sharing]
Useful website with comprehensive information about dementia and Alzheimer’s as well as information on Advance Statements and Advance Decision to Refuse Treatment.
- Advance Decisions (to Refuse Treatment) information here
- Financial and Legal Affairs information here
- End of Life Care, general information here
Ambitions for End of Life Care [Useful for thinking, discussing and deciding]
A national website with end of life resources, which is continually added to. Includes information you can download here
British Heart Foundation [Useful for thinking, discussing and deciding]
National charity for heart disease, which includes helpful booklets and information. A link to an article on talking about death and dying is here
British Lung Foundation [Useful for thinking, discussing and deciding]
National lung charity with wide range of general information about lung disease. Includes an end of life booklet with information about advance care planning, talking with family and children and bereavement. The link is here
Cancer Research UK [Useful for thinking, discussing and deciding]
Information about what advance care planning is and what it involves as well as what happens towards the end of life is here
Citizen Advice Bureau [Useful for thinking, discussing and deciding]
Free, independent, confidential and impartial advice to everyone on his or her rights and responsibilities. CAB value diversity, promote equality and challenge discrimination. A link to their Welsh site is here
Compassion in Dying [Useful for thinking, discussing, deciding, documenting and sharing]
Compassion in Dying supports the uptake of existing legal rights.
Please note it is not involved in Dignity in Dying’s campaign for assisted dying for terminally ill, mentally competent adults, within the last six months of life. The main website link is here
Their website provides variety of information including:
- Planning Ahead: Making Choices – the link is here
- Planning ahead for the lesbian, gay, bisexual and transgender community – the link is here
Dying Matters [Useful for thinking, discussing, deciding, documenting and sharing]
Dying Matters is a coalition of 32,000 members across England and Wales which aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. The link to the main website is here
It has a number of resources such as:
- Find Me Help: created by Dying Matters and funded by Macmillan Cancer Support, Find Me Help is a comprehensive UK directory of services for people in the last years of life and their carers. Find the support services you need in your area quickly and easily.
- Planning for Your Future Care: this popular guide outlines the different options available to people when planning for their end of life care.
- Advance care planning for volunteers: this training programme, which Dying Matters was involved in creating, prepares volunteers to share information about advance care planning (what it means, how it can be done) with people in their local communities or work places. Suitable for community groups, health and social care staff, pensioners’ action groups and similar.
FINK cards [Useful for thinking and discussing]
These provide a set of thought provoking questions on cards to help discuss end of life plans with your family and health care professionals. Please note there is a charge for these cards. They can be found here
Gold Standards Framework [Useful for thinking, discussing, deciding and documenting]
Includes the ‘Thinking Ahead Document’ (a type of Advance Statement) can be found here
Healthtalk Org [Useful for thinking and discussing]
Provides free, reliable information about health issues, by sharing people’s real-life experiences. There are helpful videos of people talking about living with dying as well as carrying out advance care planning activity such as an Advance Decision to Refuse Treatment. An overview with links can be found here
Macmillan Cancer Support [Useful for thinking, discussing, deciding, documenting and sharing]
A very comprehensive website, written by a national charity giving you practical information about thinking about the end of your life including advance care planning. Provides further information about Advance Statements, Advance Decision to Refuse Treatment, Lasting Power of Attorney, organ donation and other useful information. Start here
Take your time to look around it as there is a wealth of information e.g.
- Macmillan Your Life: Your Choices Booklet Overview of Advance Care Planning – you can access it here
- Macmillan Advance Care Planning Check List – you can access it here
Marie Curie [Useful for thinking, discussing, deciding, documenting and sharing]
A very comprehensive website about end of life care for patients and carers including bereavement care. It is worth taking your time to look around it and discuss with your family and friends. Information about advance care planning is here
Motor Neurone Disease Association: Planning Ahead [Useful for thinking, discussing, deciding, documenting and sharing]
MIND [Useful for thinking, discussing, deciding, documenting and sharing]
National Council for Palliative Care: Planning for your future care [Useful for thinking, discussing and deciding]
The booklet provides a step-by-step guide to the advance care planning process, with the aim of enabling those thinking about the consequences of becoming seriously ill or disabled to record what their preferences and wishes for future care and treatment might be. It explains terms such as ‘Lasting Power of Attorney’ with useful case-study examples, and details the process of planning from opening the conversation, to identifying wishes here
The above can be down loaded with other useful advance care planning publications from here
MS Society: End of Life Care [Useful for thinking, discussing and deciding]
Provides a useful information booklet about end of life care, which includes advance care planning, available here
My Decisions [Useful for thinking, discussing, deciding, documenting and sharing]
This is a very detailed website (aligned with Compassion in Dying) where you can fill online an Advance Statement or Advance Decision to Refuse Treatment. The forms provide extensive examples of when you might want to complete any of these forms. You might find it helpful to discuss these examples with e.g. your doctor, nurse or social worker in order to explore all the terms and implications of your decisions. The link to the main website is here
NHS Choices [Useful for thinking, discussing, deciding, documenting and sharing]
An accessible, easy to read website from the NHS with information about what advance care planning is and links to further information here
Paul Sartori Foundation – The Foundation provides Hospice Care in Pembrokeshire. This website provides useful information about advance care planning including examples for you to see. It provides links to other resources including ‘Planning for your future care’ information booklet.
The main website link is here then look under ‘Our Services’ and select ‘Advance Care Planning’
Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) – The ReSPECT process creates a personalised recommendation for your clinical care in emergency situations where you are not able to make decisions or express your wishes.
ReSPECT can be complementary to a wider process of advance/anticipatory care planning.
It provides health and care professionals responding to that emergency with a summary of recommendations to help them to make immediate decisions about that person’s care and treatment. You can download further information about the ReSPECT process below. Once ReSPECT has been adopted and introduced in your locality, your local healthcare team will be able to guide you further.
The link to the main website is here
St Mungos End of Life Information for Homeless People [Useful for thinking, discussing, deciding, documenting and sharing]
End of Life and Advance Care Planning information from the London based Homeless charity St Mungos and a joint guide with documents with Marie Curie.
General resources can be found here
Specific end of life care information for those who are homeless can be found here
Sue Ryder [Useful for thinking, discussing and deciding]
Information and advice about planning ahead, advance care panning, Lasting Power of Attorney, making a will, planning for your funeral and bereavement can be found here
Young people and Advance Care Plans – Wales
Please see ‘ACP’s for young people’ for access to information available across Wales